Thursday, January 31, 2013

Day 229 - several tiny thoughts

Today was fairly similar to yesterday except with different dinner companions. Yesterday I had dinner at Blue Moon with Tommie and Terry. Tonight, I am having dinner at Zampa with a bunch of palliative care doctors.

Both days included a nice time at work; yesterday, all hospice house, today, Norris Cotton followed by hospice house. As I think I've mentioned, I will be helping Dartmouth start a palliative care clinic that will be located in the Norris Cotton. It has been a long time since I've worked there and it is fun to be back. The doctors are completely different from when I was there before, but many of the same nurses are there and it is so nice to see them. I got to chew the fat, i.e., reduce their productivity, for a few minutes--just like old times. Not quite like old times, I still feel like I am not as good a doctor as I was before I got sick. I think it's just being "out of shape/practice," but I'm a little tired of it.

Speaking of tired, I am. This week, I worked four consecutive days and I would like to go to bed right now. Next week, I will take a day off in the middle of the week so I don't wear myself out so much. I had to ask someone else to see a patient that I wanted to see because I respected my non-infinite limits. I was not happy about having to do that. I might have been a little angry at the leukemia, both for showing up in the first place and for taking its own sweet time to slither away completely. When I feel that way, I try to remember that ultimately, I won and the leukemia lost, so I can be a little compassionate with it. Some days this is easier than other days.

For me, for tomorrow, I will wish for the energy to interact with a group of sixth graders in reading class in the morning and then to go to Boston in the afternoon/evening as a sixth grade chaperone. The logistics did not work out quite right here and I should warn you that tomorrow there will be no post because I'll be getting home so late. For you, for tomorrow, I will wish for convenient working out of all your responsibilities' schedules.

Wednesday, January 30, 2013

Day 228 - old home day at the barbershop

Today was notable for a couple of reasons: haircut number 3, a patient interaction where I felt like I was on my game again and a third consecutive day of working.
The work day went well. A former employee was volunteering and it was great to see her. I saw some patients and that went well, but then I had an interaction where I felt like I was back in the groove again and that was so wonderful. The whole leukemia experience has made me a better doctor in some ways, but it's got me out of practice and I get tired out pretty easily still. It's nice to feel like I'll get back to being able to concentrate and expend the energy that good listening takes.
As far as working three days in a row, I really felt tired at the end of today. I had planned on seeing one more patient, but she was asleep and difficult to waken and I was so happy to see that. I'm glad the work week is almost over as I need the rejuvenating.
I went to the barber shop as the hair by my ears was starting to lop over the top and I want to look spiffy. Jim actually took a little off the top. I think he was thinking I might look better with more off, but I wasn't sure so I had him hold off for now. Maybe next time. A friend of Jim's came in to drop off his cute little dog and it turned out she was a former patient of mine! We were very happy to see each other. She had had a hard time since I saw her last, had been unable to find a new PCP that she really "clicked" with and I felt very sad about not being able to help her out. We chatted for a while and I was so happy to see her, but so sorry that I hadn't been there when she needed me. It is weird to be so embedded in people's lives and then suddenly leukemia and poof! you're out. I think it was a surreal experience for all of us.

For me, for tomorrow, I'll keep hoping for that slow crawl toward normal. For you, I'll hope for that slow improvement of normal.

Tuesday, January 29, 2013

Day 227 - OK labs

Dr. Hill just called to let me know my labs, while still not perfect, are moving in the correct direction. My platelets were 30 too low last check, now they are 15 too low so--progress. We're going to recheck in 10 to 14 days and hopefully they'll be all back to normal.
I had an interesting experience at the POLST training session yesterday that I wanted to get your opinions on. We were role playing and a pretend patient asked me how likely it was that I would not be able to get his symptoms under control at the nursing home he lived at, how likely it would be that he would have to transfer to a hospital for symptom control. I told him that I had only had one patient in the ten years that I worked there who had had that problem. Afterwards, he told me that that method of expressing a very low probability (which is what I was trying to do) was actually anxiety provoking and that I should find a different way. I thought that was interesting because I have used that method a lot and have not noticed anyone seeming to be made more anxious by it. What do you think?
We also talked a little bit about the studies that have shown people have a harder time understanding 5% than "1 in 20." People who study these things say that your average person gets what 1 patient of every 20 means better than they understand 5% and that it is not obvious to many (most?) that they are the same. For this reason, people recommend that you give numbers as proportions rather than percents. For events that are much less than 1%, it seems that saying "one tenth of one percent" or even "one in one thousand" are hard to wrap your head around. My "happened once in ten years" was an attempt to say essentially, "it happens, but is pretty rare." How else could I say that?
Otherwise, today was a fairly normal day. I was not as tired from eight hours of education yesterday as I feared I might be, but I felt not quite 100% today. Sorry, I felt not quite 1 in 1. I felt more like 4 people out of 5 people. (as long as all five were silly)
For me, for tomorrow, I will hope for back to normal energy. For you, I will hope for the energy to do what you want to.

Monday, January 28, 2013

Day 226 - smarter by a bushel

Today I went to an educational event where I learned how to help people fill out a POLST form. If I were not so tired,  I would tell you more about it rather than link lazily only. The funny thing about being tired is that I didn't realize I was tired until I noted that I could not focus on a popular science article about bird migration on the BBC website. I realized when I was skimming pleasure reading that I must be tired. It's the old eight hour day again. I'm still not quite ready to be a normal person. Drat it!
I enjoyed the education and feel a bunch smarter and way more prepared about helping people do advanced care planning. I also enjoyed getting to see a bunch of hospice and palliative care folks from all over the state.
I am going to go to bed as soon as I have helped Ellie get to bed so more details will have to wait until tomorrow.
I am going to hope for good labs for me for tomorrow. For you for tomorrow I will hope for good news too. If you're not expecting any news, even better: good, unexpected news.

Sunday, January 27, 2013

Day 225 - Susan Sontag and lab delay

Today I spent mostly running errands and running Ellie around. Not too exciting, but getting the errands done is pretty nice. I learned a sad fact and that is that Byrnes and Carlson is not open on Sundays in January. I think I have learned that fact in previous years and then promptly forgotten it, probably over and over. I did some weaving. It's actually very ugly, but I am still trying to understand doubleweave, now with "block structures" which means that if double weave blew my mind before, now there is twice as much of it, sort of double double weave. Because the point is to learn double weave, I can tolerate some very ugly learning samplers. I will try to make something pretty for my next project, though, because it gets discouraging, making ugly thing.

In leukemia news, I am supposed to repeat my labs tomorrow, but due to my work schedule which has me in Concord at a class all day, I cannot get them done easily. Therefore, we'll have to wait until Tuesday to do them and Wednesday for results. As a stranger remarked to me several months ago, being a patient helps you develop patience. Am I putting them off by a day because I think they're going to be bad and I want to be ignorant of it for another day? Am I putting them off because I think they're going to be fine and it's a bit of an exercise in "we have to check this because it's what we do, but we think they're going to be fine" and I don't want to be inconvenienced for that? Or, am I putting them off because I am going to be spending 8 am to 5 pm with an hour commute on each end in a class with lunch served to us there so we can keep working and am carpooling so I really don't have a single moment before 6:30 pm to do them? I think the true answer is 2 and 3, but I'd be lying if I didn't say that the idea of being locked back up in chemo jail (which is, of course, the threat with bad labs) is extremely unappetizing. I think there is also some "I'm in no hurry to do anything that could put me back there" in play as well. Just for the record, I feel well and highly doubt that my labs will be anything besides fine.

I found this around New Year's when people were talking a lot about new year's resolutions. It's from the NYT: "In 1972, 39-year-old Susan Sontag noted in her diary:

    Kindness, kindness, kindness.
    I want to make a New Year’s prayer, not a resolution. I’m praying
for courage."
I am not sure what would have happened to this if it were in a place where it would have been editted, but I like very much the idea that in order to get kindness, you have to start with courage. I think that is a very apt observation that often being kind takes tremendous courage and being mean or apathetic usually takes less.
I'll wish for the courage to be kind for all of us for tomorrow.

Saturday, January 26, 2013

Day 224 - why do you ask?

I have always found the question of how much of myself to reveal to patients to be a thorny one. My initial feeling was that I should not reveal anything of myself because the encounter is not really about me, but then my patients taught me differently. When I started in Exeter, I picked up a practice intact from a doctor who was moving out of state. Fortunately for everyone involved, my style and hers were fairly similar and patients were not too shocked by my ways. One thing that surprised me, however, was that fairly frequently patients would tell me stories about her or her son, that she preferred salty snacks, that she had problems with sinusitis or similar sorts of things. None of the stories were inappropriate at all, but they always seemed surprising to me. At that point, I would never tell people personal things about myself at all and, yet, I could see that people really valued the stories they had about her. I wondered if I would be a better doctor if I told occasional stories about myself. I started letting out little pieces of myself if someone asked if I had children or if I liked the snow instead of dodging the question I'd answer in a straight forward way. It didn't seem to weaken the relationship so I kept doing it. I experimented a couple of times with offering information along the lines of "I can be sympathetic with how terrible sinusitis is because I get it all the time too" and I never seemed to be able to get it in a way that felt authentic and useful so I stopped.
I changed jobs and my patient population changed somewhat to include a large group of young women who had just graduated from their pediatricians. A number of them were facing big issues: college, moving away from home, first job, terrible boss, sexuality issues, mean co-workers, all the things that one faces as an adult that one may not have faced as an adolescent. Their issues and personalities filled the room and I returned to being as plain as a piece of tin foil.
About this time, I started talking with my therapist about the doctor-patient relationship and the idea of being a blank slate about whom patients can imagine whatever is most therapeutic for them made a lot of sense. I returned to letting very little information out. As the years went by, I began to share more and more about myself with some patients--those who did not seem to have needed me to be a reflecting surface. It was never the focus of our conversation, but I have shared the story about "holding thumbs" from the Community Hospice House many times, can be sympathetic about children leaving home in a way that works and I have travel photos I've taken and a couple of very high quality oil paintings done by family and friends on the walls of my exam rooms. I will tell people who painted them if they ask.
Now, I've had leukemia and it is generally known. I wonder what impact that will have on what I tell people about myself. Currently, it is not something I disclose to patients although I think it's about half and half that patients and their families know.
A really interesting difference between the primary care doctor/patient relationship and the hospice and palliative medicine doctor/patient relationship is that people whose family members are dying are, in general, not as interested in the doctor. I also cannot think of a time when I had the sense of being a foil for a person when I was being a hospice/palliative care doctor. Their issues are simply different than my primary care patient's issues.
Another really interesting thing is that I have been asked twice by patient family members since I've been back from leukemia whether or not I believe in an afterlife. I have never been asked this before and now I've been asked twice in a month. Both times it felt completely out of the blue, like we were not discussing afterlife or even issues that I would have thought of as spiritual issues. I have no explanation for it.
So, you might be curious what I've been up to today. Kittery with Terry, crossword puzzling, a little weaving and taking Ellie and one of her pals to see "Wreck it Ralph" were the main activities today. You can see why I don't tell my patients much about myself; it's because my life is beautifully, wonderfully boring.
For us all, for tomorrow, I will wish for lifting of the mercury just a little.

Friday, January 25, 2013

Day 223 - big dogs, big journals, big fun

Ever notice how nobody ever says "Is it cold enough for you?" but "Is it hot enough for you?" is commonly said. I wonder why not and why. In case you were wondering, it is cold enough for me. Maggie wouldn't mind it if it were colder, however. Today Maggie and I went to visit my friend Joni and her dog, Talaigh (said "Tally" like tally ho). Talaigh is a 90 pound Great Pyreneses with long white fur and a playful temperament. At first Maggie was afraid of her and kept trying to hide behind me, but soon she began boxing with Talaigh and then they began playing with toys together. Maggie seemed to have figured out there was no way she could muscle toys away from Talaigh so instead she would distract her and then swoop in to steal them. It was adorable. A funny thing is that she will defer to Kita who is significantly smaller than her and Talaigh deferred to her. Good luck understanding the canine brain. We had lunch and they had playtime. A good time was had by all.

In addition to lunching, I breakfasted with Patrick at D2 which was very nice. I called my new friend and fellow traveler in AML land and he is doing well. I don't remember if I blogged about it, but the induction chemo is supposed to run without interruption for 7 days. They're very serious about the without interruption stuff; you're supposed to keep it going even in the shower. Fortunately for me, there was a pharmacy delay and for one very pleasant hour, there was no cytarabine to infuse for me so I was able to run into the shower without my annoying companion. Evidently something like this happened for him too so he was feeling quite clean and spiffy when I called.

I have a few good articles to recommend. The JAMA from Jan 23/30 is about readmissions and has one article I really liked about Diagnoses and Time of Medicare Readmissions. It turns out that the peak day for readmissions for AMI, CHF and pna (pneumonia was feeling left out without a three letter acronym) is day two after discharge with an almost imperceptible decrease in readmissions every day after that to day 30 which was the end of the study. People with CHF and AMI are most likely to be readmitted with CHF. People with pna are most likely to come back for pna, then CHF. There is no real difference between which diagnoses people come back with in which part of the month. This says if you could eliminate CHF readmissions, you'd be very successful. I remember in residency having it made very clear that you have to find the cause for every CHF exacerbation. I wonder if people dig down further into the CHF readmissions and sort out why the people came back: dietary indiscretions, med mixups or non-compliance, infections, new cardiac events, arrhythymias, etc. My guess is that would be a much harder study to do and even harder to do right because it would not be automated data and it requires a good H and P for each readmission. I think that might be where the real explanation is. The December 13 NEJM had two really great articles that described in narrative form what it was like to be in a flooded and failing hospital: how they dealt with patients, no water, etc. and also what it felt like. One of the articles talks about how "Bellevue was empty of patients--probably for the first time since it opened its doors in 1736." I remember thinking when I was a resident about how I was part of an unbroken chain of doctors taking call all night that stretched back for generations. I imagined us all holding hands in a chain back into a past where I thought the records had probably even been lost and it made even the difficult nights feel a little more, well,  sacred. It seems like something is really lost when a hospital has to close even briefly, but it also seemed like the people who did their jobs or whatever jobs needed doing while the hospital was flooded really did a good thing for their hospitals.

For all of us for tomorrow I will wish for the chance to do good things.

Thursday, January 24, 2013

Day 222 - Manely hair

I've noticed that I don't start in a very interesting way usually. I feel like the second grader who writes their life story as "then I ate dinner. Then I took a bath. Then mom said I could stay up late and I watched TV. Then I went to bed." If I were speaking with you, I could at least wiggle my eyebrows and use a dramatic voice.

Most of today's energy was spent on work: work meetings, seeing patients, more work meetings, followed by signing, a little visiting and home.

Once home, Ellie, Terry and I went to the hair shop for Terry's haircut and Ellie's first hair dying! You may remember the story about the hair shop, but it's such a nice story and so emblematic of my leukemia story that I'll tell it again. The first question I had for Dr. Manno when he gave me my diagnosis was "Is this one of the treatments that will make my hair fall out?" When he said "yes," I knew I had to take action. I hadn't gotten my hair cut in a long time (remember how long it was?), but Terry had gotten his cut every six weeks by the same person. He called her and explained the situation and she called her last appointment of the day and asked them to come in later so she could cut my hair off so at least the leukemia wouldn't get it. She cut it very nicely and somewhere we have a long pony tail of my hair hanging around. I hadn't seen her since then so she was really happy to see me looking well and on the other side of the leukemia. We showed her photos of what I looked like bald, but not really any of the ones of me at my sickest. Here is a picture for those of you who have forgotten how hirsute I used to be. Tommie took this picture a week or two before I was diagnosed. I don't look like a person has leukemia, do I? Gives one pause.

So, we went to see Robin and she dyed a little section of Ellie's hair bright red--actually about the color of the shirt I'm wearing. It looks really good and is kind of peek-a-boo-ish so as her hair swings around you see it and then you don't. If I had enough hair to swing around, I might get it dyed like that, too.

I've done all my work for this week so tomorrow I will dedicate myself to being a lady who lunches.

For tomorrow, I am hoping for a rejuvenating day. You know what I notice? As I get more like a normal person my wishes for myself become more universal and I can wish you the same thing as I wish myself most of the time. It makes me think of that Tolstoy (?) line about all happy families being the same; each unhappy family is individual. All healthy people have the same wishes; it's the sick ones with idiosyncratic wishes. Maybe.

Wednesday, January 23, 2013

Day 221 - how are you doing?

Today's big excitement was a trip to the Salvation Army to find a costume for Ellie for Music Man, Jr. There were several contenders, but ultimately we chose a dark floral printed woven fabric dress with a mid calf length swishy skirt and a collar. It is really nice looking and I can imagine Ellie wearing it after the play at some point in the future when we won't have to safety pin a third of the bodice fabric away. The nearest Salvation Army is in Portsmouth and the parking lot was packed. They only had three dressing rooms and it was very funny to watch person after person walk past the line and look at each of the closed doors, turn to the first person in line and say, "O! you're in line." I was treated to a few extra iterations of this because Ellie is too old to go into the dressing room with company so I waited outside. A surprising thing is they had probably several hundred sleeveless dresses, but only maybe fifty ones with sleeves. They also had about a dozen wedding dresses. I wish I had known this when Ellie was littler and totally enthralled by weddings. For the longest time she called brides "the wedding girl" and it was always a thrill for her to go by the PEA chapel when the wedding party was outside getting their photos taken.

Other excitement for today was working. I told one of my co-workers that it is starting to feel like old times which is very nice. It almost doesn't feel like a rare thing that I am spending time with patients and families.

After reading yesterday's post, Tommie told me that she worked with some one who said the question providers should be asking patients is "what is it like for you?" His contention is that we ask people how are we doing? rather than how are they doing. I realized that at least sometimes this is true for me. I saw one patient today who really what I was interested in knowing about them was "how is my plan, my interventions for your symptoms working?" Otherwise known as "am I doing a good job? a.k.a. how am I doing?" The question was "is my med concoction working to make your life acceptable for you?" not "is your life acceptable?" or "what is your life like?" Food for thought for me. When I was in the hospital, I did feel that people were asking about me and what it was like for me mostly. I didn't have a whole lot of symptom management issues and no one needed me to see how their poisons were working on my marrow; the computer was the one who knew the answer to that question with my daily labs. One more thought on the what's it like for you question. When I have talked with staff about a particular patient or family member that is more than average difficult, I have noticed that pointing out that "it must be hard to be him" is a statement that is likely to generate empathy for the difficult person. It works for me too when I am having a tough time with another person to remind myself that it must be hard to be them. Sometimes I remind myself that it is hard to be me if I feel that I am not being sympathetic enough to myself.

For me, for tomorrow, I will wish for the presence, the energy to be able to consider what it is like for you? in all my interactions. For you, for tomorrow, I will wish for whatever your answer to "what would improve the answer to 'how is it for you?' " the most.

Tuesday, January 22, 2013

Day 220 - the plot thickens

As you may recall, I had labs on Monday and the results were not ready by the time my appointment was over so John was going to call me with results. I didn't hear on Monday and figured I'd call him on Tuesday afternoon. Do you want to know the addled reason I decided to wait until Tuesday afternoon? When I got my diagnosis, I had labs on Friday morning and the confirmatory lab was not ready until 10 am the next day. I figured if my labs were bad and they had to send off the confirmatory lab again (maybe Dartmouth doesn't send it off because they may have a fancier lab than CMC; I don't know), but anyway if they had to send it off, I figured I didn't want to call them and have them say "we don't really have news for you" that I'd rather wait until I could get the whole story. So, essentially, what I did is assume I was getting bad news and plan my schedule around that. Because if you are expecting bad news, everyone knows it won't come. Just like I'm protected from my leukemia recurring by leaving my port in place. OK, then.

It turns out my labs were not perfect, but not so terrible that any additional labs were needed. What was abnormal was my platelets were a little low (124 or 121 or something like that where normal is 150 or so and up). They have been normal for quite a while. The rest of my labs were normal. My diff (the kinds of white cells) was normal. My LDH was normal. My hemoglobin, liver and kidney labs were all normal. Because John is the worry wort that he is, I will be getting a repeat set of labs on Monday with results likely known on Tuesday (for the same addlepated reason as before).  I was reminded in my conversation with John about his qualities that I like so much the main one being that he reasons very similarly to how I do, worries as much as I do and about the same things and comes to the same conclusions I do about those worrisome things. I love that he lays the whole case out for me. He also thinks my jokes are funny and recognizes when I tell a joke which not everyone does so I am appreciative of that.

Let me tell you about what happened in more detail, however. His nurse called me in the afternoon, returning my call. Given the situation, she really couldn't say anything besides, John's not worried, but your platelets are low and he'll give you a call. I didn't think it was fair to ask her to give me more information so I waited for his call. In the interim, I tried not to think about what it would be like to have to go back to the hospital now, after feeling almost back to normal. I tried not to imagine how hard it would be for Terry who hasn't really recovered from June-December yet. I tried not to consider the other providers at HHHC and how difficult it would be for them and for the staff who are just getting back to feeling like they can depend on me and whoosh! out again. I avoided thinking about Emily and Ellie and how disruptive it would be to them. But, like the famous purple elephants you're not supposed to think about, those were the thoughts. I reminded myself that Elise said John was not worried and that she would have told me if John were worried. I noticed that I was just a speck grumpier than usual because while the front porch of my mind was helping Ellie do homework, the back yard was churning with all of those kinds of thoughts. You would think that a quick reminder of my mortality would make me a nicer person, but you'd be wrong. It would make me grumpier. Fortunately, I did feel completely reassured by a totally normal rest of the CBC and a normal LDH and after I spoke with John, was a nice mom at tooth brushing and going to bed time.

Earlier today when I thought about what I'd be writing about here that it would mostly be what it means to be a doctor who has been seriously ill herself. A patient today was telling me about an aspect of being seriously ill that I had personally experienced and I found that there is a subtly different way of listening and responding when you are listening as a doctor versus when you are listening as a person who has been through this. It was very subtle, almost just a different inflection in the "mmm, that sounds really hard." The patient I was with was (I think) sophisticated enough to pick up that something was not as usual, but not able to pick up what it was. I don't think it was a positive sensation for them either. And yet, returning to the previous intonation does not feel 100% honest. This is something I will have to give more thought to.

The final thing I wanted to tell you about today is something John found interesting. I did not realize it was an interesting thing until he pointed it out. Most days, I work six hours. Six hours is comfortable and I am not tired at the end. Seven hours feels doable, but I'm tired. One day I worked eight hours for complicated reasons and I was exhausted even the next day. John said he would have thought that if you could work six hours, you could work eight hours. That is really not the case for me. Now that he has pointed it out, it is interesting. The funny thing about it is that yesterday, I was driving home and suddenly thought, wow! I am really tired. I looked at the clock and calculated it out and realized that it was 7.5 hours after I had started my day. Interesting, huh?

For me, for tomorrow, I am hoping for a calm day. For you, I will hope for the level of excitement you wish.

Monday, January 21, 2013

Day 219 - return to the scene of the chemo

What a fabulous, complicated day today was! First I headed up to Lebanon to see Dr. Hill. Our visit was good. We talked about Dr Stone's visit and the fourth round of chemo. John said that he thought if I were to relapse he would not feel that it was due to the three versus four issue; that some people relapse and some people don't and it's often very surprising and people you really think will do badly do well and vice versa. That matches my experience as well. He also said that if I thought that if I were to relapse that I'd blame it on not getting a fourth dose, that we should just give me a fourth dose. We talked about how he was not excited to give me more chemo, largely due to how sick I'd been with the neutropenic fevers. He told me he didn't see the time elapsed as necessarily an impediment to more chemo if I felt like it was the right thing.
When I think about getting a fourth dose, I wish I had had it in some ways, but now that I am back to my life and getting more and more normal, it is hard for me to think about going out again and being out of work for two more months, potentially getting another fever, needing more blood. I was lucky with both of my fevers that I did not end up really sick and in the ICU; maybe this time I would. I have seen patients end up with life changing (and not for the better) complications from their ICU stays even with perfect care. I might or might not be gaining something by doing risking a fourth course. I think I'm good at this point.
After seeing John, I stopped in for a visit with Ira to talk about palliative care and that is always fun.
My final stop in Lebanon was 1West where I spent much of last summer. It was fun because some of the nurses didn't recognize me at first and would say things like "May I help you?" then I'd laugh and say "you don't recognize me!" Then they would. It was fun to see them for me and I think for them because not very many of their successes come back to chew the fat. One of the nurses (ironically the one who admitted me the first time) took me aside and said that he had a young patient who had just been diagnosed with AML and who was starting consolidation today and who was totally freaked out. He had just told the nurse that he wished he could talk with someone who had been through it. Would I be willing? Are you kidding? What a fabulous present to me that I could do that! I did talk with him for about an hour and I think was helpful for him. It was interesting because I listened differently from how I would as a doctor. I did not have to help solve or develop a plan to solve any of his problem. All I had to do was be sympathetic and listen. (Those are the main things I do as a doctor, but I have to be waiting for any opportunity to say just the right thing at just the right moment that can sometimes be tremendously therapeutic. With this man, I had no need to be deliberately therapeutic; just deliberate. As a doctor, I also have to develop a plan for problems. I listen and am not primarily thinking about how am I going to solve the problem, but when a plan starts forming and needs a particular condition or another to work, I will check it out with the patient. None of that needed to happen in our visit today. Also, it was not my role to explain any medical things to him, just to listen sympathetically.) I think I could be a professional visitor quite happily.
One interesting thing I did find out is that he has no idea who his attending is. He said that a bunch of doctors came in and talked with him. I explained how attendings worked and told him that he might want to figure out who his main doctor is because that's the one whose opinion he was most interested in. I hadn't realized, but of course it's true! how confusing the whole student, resident, fellow, attending thing is. Especially since some of the doctors are so young looking and some of the learners are non-traditional students and older.
Then I went to the coop, drove home, went to therapy. A funny piece of trivia about me is that prior to leukemia, I never got headaches--maybe one every few years. During treatment for leukemia, I got headaches when I was anemic, in fact, they transfused me earlier than they would have otherwise because of them. Now, I get headaches much more often. Need to eat? headache. UP too late? Headache. I guess now that it knows how to do headaches, there's nothing stopping my central nervous system now.
Another tiny piece of trivia that made me happy is that I remembered when standing in line at the cancer center that the last time I had been there, I felt that I was fairly normal, but there was about a ten minute wait and I knew I couldn't stand for ten minutes. Today, I knew I could stand in line for an hour if that is what needed to happen (it wasn't, thankfully). Another touchstone, moving toward normal.
You can recognize me, right?

For me, for tomorrow, I will hope for another day where things move infinitesimally yet inexorably towards normal. For you, for tomorrow, I will wish for safe driving in the snow. Maybe I can borrow that wish too. Can I have two unrelated wishes tomorrow?

Sunday, January 20, 2013

Day 218 - this n that

Today's major activities were a trip to Target for gym shorts for Ellie, a little weaving and a bit of reading. There is a really nice article in the 1/17 NEJM about drug eluting coronary artery stents. It explains nicely the basics of the stents and the pathophysiology of restenosis. Then it goes on to compare the various coated stents with bare stents and bypass surgery for a bunch of different indications and for different outcomes. When I was in Exeter, the data about very late stent restenosis with coated stents was just starting to come out and because Exeter has a very active cardiology department and I had a lot of patients who had had stents at one point or another (including while I was their doctor), I knew the data really well. Then in Manchester, my patient population changed a bit and coronary artery disease was no longer one of my top three diagnoses. I lost track of the cardiology data and began to follow the compelling diabetes stories that were unfolding (best blood pressure, whether or not driving the a1c to normal levels was benficial, the whole -glitizone story). It was nice to be brought back up to speed. I've said this before, but I really appreciate the articles that take a broader point of view and go from consideration of molecular mechanisms to organism wide outcomes when discussing a single topic. This was one and is highly recommended even if you won't be putting stents in or needing to explain to patients why their cardiologist put in one kind of stent over another or why they really really need to keep taking that expensive new medication. By the way, I learned that it is now fashionable to call them P2Y12 inhibitors instead of anti-platelet therapy. My patients used to think it was funny when I would tell them what was fashionable in the doctor world, but it's really true that there are terms the cool doctors use to let the other doctors know they're up to date in their journal reading.
The other article in the 1/17/12 NEJM that was interesting was a perspective on FUO (fever of unknown origin) which is a classic internal medicine problem--a patient with a fever over 101 several times over three weeks or more with no diagnosis despite 1 week of in patient workup (more recently 1 week of out patient workup has been allowed to substitute for inpatient workup). The point of the guy's article is not what I want to talk about here although it was a fine article. He describes the typical FUO patient in his hospital as (among other qualities) in the ICU still spiking fevers for weeks and sometimes months on end. Then at the end of the article, he talks about how the patients with FUO often end up having family conferences that include plans for palliative care. Plans for palliative care in a patient who has been in the ICU for weeks? These would be prime examples of patients who should have had palliative care consultations weeks ago. If the NEJM can't get it right, why should I think that the docs at my community based hospital can? It's a little discouraging.
This is not discouraging--for me at least. It's fun to take close up pictures of the long-suffering dog.

Tomorrow, I will be headed up to Lebanon for what I hope will be a very anti-climactic visit where John will say, "You're doing great. See you in three months."
For me, for tomorrow, I'm going to hope for utter dullness. For you, maybe utter dullness is a little too far, so I will hope for regular dullness, of the variety that is most congenial to you.

Saturday, January 19, 2013

Day 217 - placeholder

We went out to dinner tonight and I have already stayed up way too late! We had a wonderful time. Sleep tight, all!

Friday, January 18, 2013

Day 216 - the scale is in order today

Ah, that felt better. Today was a very good day at work. I talked with Cheryl who will be the manager of the palliative care clinic to do a little planning and am quite excited about the clinic. I visited some of my old friends at CMC and that is always fun. Then to Merrimack for the tiniest bit of work and I was called back to CMC where I was able to do my first hospital consult of being back. It went really well. I was worried after yesterday's mistake of thinking stage 5 kidney disease was endstage that it was perhaps time to hang up my stethoscope. The consult went really well from a palliative care point of view and I was able to figure out a puzzling physical exam finding that was previously unexplained (and unrelated to the reason I was consulted). I feel better; I am not quite fully on my game, but it seems that slightly off my game is good enough while I continue recovering. I had gone for a quick walk through the ICU a week or two before, but didn't see anyone I really knew. This time I got to work with a bunch of nurse and other staff I knew so it was nice. The ICU nurses were mostly up to date on the scoop, but some of the docs that I don't know super well hadn't even noticed that I'd been gone for six months! One said, "I haven't talked with you in a while." I responded, "I've been out ill." He said, "Me, too. I had a virus for about six weeks and it just wouldn't go away." I wasn't sure what the best response might be so I was just sympathetic.
Dinner at Bai Cha with Terry and Tommie rounded the day out. They told us it was the same cook as always, but Terry and I felt it was the best Thai food we'd had outside of Berkeley. I am not sure what magic was going on in the kitchen tonight, but I'm sure glad I got a tiny share of it.
Today was really a most satisfying day. I had been truly just a little worried that reversing the scale yesterday meant that my brain was still recovering from chemo (or would never recover from chemo) rather than that I had made a mistake that anyone can make with a little piece of arcania that they do not pull out of their brain and manipulate daily. Yeah! I do still have some good doctor skills up my sleeve, in my back pocket, wherever I store those things.
For me, for tomorrow, I am going to wish for a happy, relaxing day. For you, for tomorrow, I will wish for the same.
By the way, this is what happens when people with short hair go to bed with wet hair:

Thursday, January 17, 2013

Day 215 - reversing the scale

Today was a fairly unspectacular day. I did have my first embarrassing evidence that I did forget some things while I was out on leave today. We were talking about chronic kidney disease and I reversed the stages of kidney disease, putting 5 as end stage when it's 1 that is end stage. How embarrassing. I did remember the GFR numbers that go with each stage, just had the numbers reversed. Still. Would I want a doctor treating me who couldn't keep straight in which scale smaller numbers are healthier (ECOG, cancer staging, MELD) and in which they are less healthy (CKD, PPS, FAST)? There are obviously a lot of scales and arbitrary numbers to keep straight and in my head. How many of them are important? What does it mean to be 90% at keeping them straight? (lower is less healthy) Now that I am not doing general medicine on a daily basis, especially after a six month hiatus, what of my general medicine knowledge will atrophy and what of it? Will I know it if too much is lost? Maybe I better get studying for those boards right now.
I also had the experience of filling out hospice eligibility forms that I used to fill out (Pre-L) so frequently that they were almost automatic. I had a whole stack of them and had the feeling of "I'll just tear through these" and kept getting held up by wondering "Did I remember the part about chosing a hospice plan of care on all of these forms?" "Did I include the verbiage about expected prognosis of six months of less on every form?" There are like touchstones of Pre-L and After-L that I can use to directly compare what was it like last time I did this activity? Another one is walking into the bathroom at the Epping Starbuck's where we stopped on our way to Manchester one day when I was feeling horrible and looking worse. Every time I see myself in the mirror as I walk through the door there, I remember how startled I was that day in September and how I felt then and how I feel now without having any of the intervening feelings to confuse me. The pre-, during and after- versions of me feel very different in some ways--both good and bad. I read an article in the NYT where they said people imagine their personalities developing towards what they are in the present, as though their current self was the goal. They don't realize that in ten years, they will feel about their current self the way they feel about their ten years ago self now. I'm not sure I buy that for myself. The researcher didn't look at specific populations of people, for example, people who had had a serious illness to see if they had the same view of their personal development. It might have been interesting.
As for the rest of today, I worked seven hours which feels like the limit. I managed to talk with a consultant I know a bit who I haven't spoken with in seven months without telling them I had had leukemia.
For myself, for tomorrow, I am hoping to feel for sure my brain is working well. For you, I hope that you are reassured about whatever your biggest worry is.

Wednesday, January 16, 2013

Day 214 - not much to report

The excitement for today was SNOW! I write it that way because I am sure that's how Maggie would say it. Because the nearest entrance is four plowed blocks away, we drove and when I opened the car up, who should be there, but Maggie's dogwalker (a.k.a. the dog-goddess), Barbara. She had three of Maggie's pals with her and it took Maggie a few minutes to decide if she wanted to ski with me or go home with Barbara. Finally, she decided that she would come with me, but she was really considering her options. We went for a 3 mile ski which was far more successful than the last one (glide, clomp) as it only involved a couple of icy snow build ups on the ski. This time it would just happen randomly and suddenly one leg or the other would not glide and I would almost do the splits as the other leg and the rest of my body continued on. I managed not to land in the snow only by extreme luck.
Other excitement for today included coffee with Patrick, lots of journal reading and a visit to the ice cream store.
My taste for sweets has partially returned, partially in both depth and breadth. I do not like sweet things as much as I used to and I like a much smaller range of sweet things. That said, after a skiing adventure, a scoop of ice cream seemed just the thing. Pre-leukemia, I went to Stillwell's a couple of times a week, but after-leukemia, I have been fewer than five times. I started going soon after they opened and the owners were the only employees. As frequent customers, we got to know them a bit. They've been doing really well, opened another store, hired lots of employees and are now only intermittently in the store. I've seen the husband of the couple and had a couple of conversations with him, but he did not mention the hair. I saw Arielle today for the first time in about eight months and she commented immediately on how nice it looked. Someday, I'll just say "thank you" and we'll talk about how easy it is and then the conversation will move on, but I'm not there yet. Now, I tell I know people the whole story. I think the more times I tell it, the more it will just become a narrative, embedded in my life story the same way and with no more emotion than "and then we moved from Minnesota." Arielle had been having a not very good day, involving the annoyances of life that can add up: a wet shoe, a broken hinge, unhappy children and said thinking about the suddenness, the unexpectedness of a diagnosis like leukemia in addition to how well I was doing, made her view her morning differently. I was glad to help.
A reasonable question might be to ask if I view those annoyances any differently now that I've been through a life-threatening illness. I'm not sure, but I don't think so. My response to a collection of minor calamities is usually to laugh at how obnoxious they all are and how they're piled up. I usually just tell everyone in sight about my traffic jam of nuisances and that works wonders. What I do notice is different, is that I am somewhat more likely to think about what I'm doing with my time. I am a little less likely to goof around on the internet without considering my options. I may be almost as likely to actually play sudoku, but to have my brain consider if this is really what I want to be doing seems like progress in conscious living.
For me, for tomorrow, I hope for continued progress in paying attention. For you, I will wish the level of attention that is ideal for you.

Tuesday, January 15, 2013

Day 213 - a sad evening

Today would have been a perfectly lovely day except that when I got home from work, Emily mentioned that there was a snow storm coming and she had to be at her work tomorrow and did I think she should leave today to avoid having to drive two and a half hours in a snow storm? Wah! It is definitely the safer option for her to leave this evening, but I was looking forward to one more dinner and one more cup of coffee in the morning. Obviously, I want her to have a safe drive and she said she'd rather drive in darkness than snow so, it was the right choice for her to go, but I really don't have to like it. And I don't. There is still a part of me that thinks it is ridiculous for Emily to drive to Massachusetts--she's a newborn and newborns can't drive. She's not a newborn? You seem to be confused.
In other news, I haven't written about my port in a while. I'm still nervous to get it out because I don't want to jinx myself. (Everyone knows nothing causes leukemia to relapse like port removal--I read it in the New England Journal.) On the other hand, I would like it out because it is itchy and when I scratch it, I get weird little needles of neuropathy zinging around my upper chest wall sometimes. It would not be fair to call it neuropathic pain, and almost not fair to call it discomfort. Mostly it's just weird to scratch the top of it and feel an electrical sensation a couple of inches away. Sometimes if I press gently around the edges, the way one might if one wanted to make sure there was not swelling anywhere around it, it is a little tender. I would number it at way less than a 1, but as I have never  thought about my chest wall previously, it gets my attention. Also, the port is kind of unattractive and Ellie is weirded out by it.
The January 16, 2013 JAMA has several nice Perspective articles in it. One is a proposal for a mega-trial fund that makers of blockbuster meds could either contribute to voluntarily or by legal coercion. I thought it sounded like a great idea, because, as every doctor knows, the trials that are funded very seldom answer the questions we really need answered and often we are left putting information from two or three trials together to get a whisper of an answer. A funny thing about it is that I actually recognize the author's name as writing other pieces about statistics that I enjoyed reading. He's a very famous guy, but that's kind of geeky for me to recognize his name: Ioannidis.
The next perspective was also a little bit geeky and more specifically about statistics. The author was addressing how if you have access to a large data base and know how to mine it, you can put forward hundreds of hypotheses and ignore the ones that do not show an association--the observational study version of the "prespecified end point" problem. (Remember if the P value is <0.05, this means that one in twenty associations will be positive by chance and if you check twenty associations and only publish the positive ones, you are probably getting fooled? If you don't let people know that you have done this, your audience is getting fooled.) Anyway, this guy suggests that there be pre-specified falsification end points, basically a statement that you believe to be false related to the database. If there were an association in the database, you would know that the database was suspect. For example, if you were testing the "PPIs are associated with pneumonia" hypothesis, you could also see if PPIs were associated with something biologically implausible like urinary tract infections.
The final Perspective was also pretty nice; a systems researcher who ended up getting a heart transplant talked about his experience as a patient. The best part: "Patients don't care how much you know until they know how much you care." Not much left to say.
There is also a nice Grand Rounds about "Bacterial Co-infection in the Flu." I really like articles that go from molecular mechanisms to the organism to medications (which are other molecules).
If you had asked me this afternoon, what I was doing tomorrow, I would have cheerfully said, "Coffee with Emily and then seeing her off." Now, I'm not sure what I'll do. Perhaps solo coffee and sopping my tears with the NYT crossword puzzle. The good news is that I bought my hotel and airplane tickets tonight so at least I don't have to dread doing that tomorrow.
For me, for tomorrow, I will hope to be able to remember that Emily is very happy at school and that growing up is what children are supposed to do. For you for tomorrow, I will hope you are comfortable with whatever change is brewing in your life as well.

Monday, January 14, 2013

Day 212 - this n that

The rest of today was pretty low key. Emily and I went to Portsmouth to buy her chocolate to take back to school and for me to take up to 1West nursing station in Lebanon. I was taken by surprise on my last admission with the announcement that I was done with chemo so I did not bring up chocolate or say a very good "thank you and good bye" to the nurses. I will do it Monday when I go up to see Dr. Hill.
You may recall that I told you the nurse practitioner called on Friday night to tell me that there was a new secretary and John wouldn't be in the clinic after all on Monday morning. She then rescheduled me, but told me she couldn't schedule me in the computer, but would have the secretary do it Monday. Oddly, John called me on Sunday night to deliver the same message. He was surprised that I had already been called. Sometimes I get the feeling that the left hand is not only unsure what the right hand is doing, but it is not always aware that there is a right hand. Hopefully my appointment on Monday will make its way into John's schedule. I think I'll double check that.
It was nice to talk with John and I'm not entirely sure I'll be able to remember well enough what I was upset about to tell him. He sounded pretty tired and it makes me reflect again upon the role that my being overtired may or may not have played in my own leukemia. We'll know the answer at some point in the future and I suspect it will be yes.
I (finally) signed up for the national hospice and palliative medicine convention. Now all I have to do are hotel and airplane tickets. I always have a hard time getting myself to sign up for conferences and doing the details around them like hotels. I always have a great time and vow that next time I'll do better and then I never do. I don't know why I am always a procrastinator for conferences; I don't procrastinate in general and it's not like I have any negative feelings about conferences. It's a puzzle. I really enjoyed signing up for all the interesting sessions and am excited to think about how much I'm going to be learning in March! The last one I went to was a couple of years ago in Boston. This one will be in New Orleans which I have never been to.

This is what happens when I let Ellie use my ipad. Could I produce such a picture? No comment.
In other news, I wove a little bit and cooked a little bit and drove Ellie around.
Tomorrow I am going to work. For myself, for tomorrow, I will hope for wisdom to see what needs to be done and the best way to do it. For you, wisdom is not a bad wish either.

Day 211 Update

I am still puzzled about why I was so tired yesterday, but I was pretty tired even this morning right when I woke up. I had tried to avoid that by getting nine and a half hours of sleep, but even that wasn't enough. Not sure what else I can do; I suspect nothing. Like the leukemia, the fatigue just shows up when it takes the mind to. It will likely leave in its own sweet time.
I did try taking a walk yesterday because that does usually help. I know you'll be surprised to hear that on a day where the trails at PEA were ice, water or mud covered, every single inch unless it was ice and water and mud covered, there was not a single other person out walking on the trails besides Maggie and me. Maggie did meet a dog on the street, a rescue from a high-kill shelter in the south. The woman who had her told me, the shelter said, "She's kind of plain and no one is paying her much attention." Then she said, "I feel like that's the story of my life so I knew she was the dog for me." The dog turns out to be very cute, extremely well behaved and to be friendly with other dogs, not a "plain Jane" at all. Maybe the dog can help the woman see how silly thinking of either of them as "plain" is. As for the attention piece, Maggie and I chatted with them. Perhaps we are chopped liver? I don't know if the walk helped the fatigue piece or not because there is not another version of me that would be even more exhausted without the walk although usually I feel better after walking.
Yesterday's other fun activity was a trip to The Friendly Toast in Portsmouth as one of the things Emily wanted to do before she leaves for school this week. If you've never been there, it's worth a visit next time you're in the SeaCoast for an art event.
A reminder from my front yard of what actual snow looks like. The still blooming pansies are a bonus. Taken at the start of the melt. Now, it's all mud, but the pansies are still blooming.

After doing my NYT puzzles, I often read the news and happened upon the writings of Dana Jennings, a reporter who discovered two years ago he had aggressive prostate cancer, had a radical open prostatectomy and writes occasionally about his recovery. I like his writing and his views and he grew up in the SeaCoast. What really got my attention, however, is that for about one and a half years after his cancer, he wore a buzz cut. He says:
When the cancer was most difficult, right after surgery and during radiation and hormone therapy, the buzz cut helped give me ownership of the disease. It was one of the ways I chose to face this world when I was sick.
I needed the primal ferocity that the buzz cut proclaimed to help keep me going, needed to look like a vintage middle linebacker — Butkus, Nitschke, Huff — as I waltzed and wrestled with cancer. To scare off potential predators, I needed to be a herbivore that looked like a carnivore.
My treatment didn’t make my hair fall out, but I also wore the “three-zero” buzz — it was so short, I felt as if I could strike a match on it — to show solidarity with my sisters and brothers in disease who had no choice about whether they kept their hair.
I am not sure I can articulate as well why I want to keep my hair short now. I feel like it is a reminder of the leukemia, but not a bad reminder. I am hoping it will help me remember the important things I learned without bringing up the unpleasant parts of the experience. There is also a part of me that feels as if growing my hair out as fast as I could (or wearing a wig when there was no hair) was denying that the cancer was there as though it hadn't happened. Since my cancer had nothing visible or palpable and there's not much in the way of surgical scars, the hair is the one physical reminder I have of the leukemia. It is also the only publicly visible one as my port scar is on my upper chest and my bone marrow biopsy scars are on my upper butt. I can imagine some cancer patients being anxious to grow their hair out as quickly as possible, but I also imagine people feeling like they need to be well and thoroughly done with the cancer before they grow their hair again. I wonder if there is a basis in the cancer for when people regrow or who regrows or if it's completely psychological.

As long as we're on the topic of reading recommendations, the 1/10/12 NEJM has a first rate article on "Post Hospital Syndrome--An Acquired, Transient Condition of Generalized Risk" The same journal has a picture of the hugest hernia I have ever seen and a cool case record. Also, an article on B12 deficiency. I am sure you'll be happy to know that my practice with respect to B12 deficiency lines up pretty well with the article's recommendations. I was because I had had to put it together from a whole bunch of different sources. I love their Clinical Practice series.

I am anticipating that I'll be back this evening so I will refrain from wishes right now. I first typed "whishes." I will whish away.

Sunday, January 13, 2013

Day 211 - exhausted

This fatigue stuff is very weird. I slept nine hours last night and this morning I was so tired I needed a nap after being up for two hours. I did well after that until about 7:30 when I began longing for my bed. I am about to put Ellie to bed and then my left and right feet will race up to bed, hopefully I will get into bed before I fall asleep. Other than the sleepiness showing up randomly, today was a very pleasant and non-remarkable day.

For me for tomorrow, I will hope to be just a bit healthier than today, not that there was anything wrong with today, just hoping for improvement every day. For you, I will hope for a good start to the workweek.

Saturday, January 12, 2013

Day 210 - healthy?

When I was a freshman in college through a complicated set of social relationships, I met a little girl who was deaf and blind and her mother. She was not profoundly either deaf or blind and especially enjoyed music. I was still playing a lot of viola back then and was in the pit for a couple of musicals in the community. I always gave my comp tickets to KC and her mom who enjoyed them. I didn't have any family in the area and none of my college friends were really that interested in hearing local community groups put on The Sound of Music so they were the only people in the audience for me. For Christmas, KC's mom gave me a photo of some trees framing a meadow with lots of mist all around. It said, "Of magic doors, there is this: we do not see them even as we pass through." KC's mom, whose name is completely lost to me, said she thought it was particularly appropriate for me. Freshman year of college was almost thirty years ago and I still have the picture. In fact, I used to display it in exam room #9 to let patients know that I thought transformative experiences were a possibility for any of us at any moment.
For work in the next couple of weeks, I have two powerpoints: an informal one for our provider meeting with a review of a medication and a more formal one for the primary care doctors about palliative care: what it is and why they care, essentially. Because it is important to me to sound like a person with a clue, I have been working hard on them and various web searches and reviews were the main activity for this afternoon.
The day's other activities were an early morning trip to Starbuck's with Terry, a mid morning trip to Starbuck's and the feed store with Emily and a NYT crossword puzzle. As I downloaded the puzzle, I heard my internal brain voice say, "Hey! This is the first one of these I've done alone since I was sick." Meaning, evidently that some part of my brain has arbitrarily decided that I am no longer a sick person. The last crossword puzzle I did by myself was probably mid-December. I guess somehow in the past four weeks I have slipped through a magic door into the healthy room. It is always fascinating to me to find out what is going on in my own brain. On the other hand, you know what they say? Don't believe everything you think.
So, we know what the unhinged narrator in my skull thinks, but how do I feel about the possibility of (ha!) self-identifying as a healthy person again? It seems a little scary and presumptuous, in a way. If I say I'm healthy is that like tempting fate? I can get my port out now and I've been afraid to do it because I worry that removing it will cause me to need it again. On the other hand, there is a way in which I miss being the sick person. Overall, the expectations were quite straight forward; there were not so many things to keep track of and any tactless thing I said could be written off to a fever or chemo.
I am not sure what I will be doing tomorrow, but I hope I will be feeling healthier and more comfortable as a healthy person. For you, I hope you feel comfortable in whatever role you are assuming these days.

Friday, January 11, 2013

Day 209 - less and less

I have just gotten a journaling app and have discovered that there are a lot of issues I'd like to chew on by writing about that I cannot put on the internet. I keep starting entries for today and then saying, "woops! can't put that out in the world." I knew this would happen eventually because more and more of my time is occupied with patient care (which I cannot write about except in general terms) and medical director stuff (much of which I can't write about at all). So, I'm left with leukemia which is slowly becoming a smaller part of my life, chronicles of my walking and my dog barfing which are only interesting to the really hardcore fans and notices about the development of the out patient palliative care clinic which are pretty slim right now, but should be picking up soon. I might start checking a blog like that only once a week, but you all are kinder than I am.
Hey, did anyone notice how casually I slipped that leukemia is becoming a smaller part of my life in that last paragraph? Pretty slick, huh?
My wish for tomorrow for myself is to learn everything I can from my leukemia while it shrinks just a bit in importance. My wish for you tomorrow is for pleasant learning opportunities.

Thursday, January 10, 2013

Day 208 - second opinions

I continue to struggle with my nose looking like Rudolph and my voice sounding like a frog. I've had enough of this virus, thank you.
This morning, I re-learned eDH, but this time from a specialist perspective and I am actually excited about it. Well, not exactly excited about eDH, but excited about getting to be at a palliative care clinic and getting to set it up the way I think will provide the best care. It is fun to think about doing that. There is a way in which palliative care feels so much more orderly than primary care. Like when Gerry shows how one can put one's most used orders in a collection and organize them by diagnoses or by symptoms, I feel like I could do that and somehow make order, organization, out of the field in a way I never could in general internal medicine. Or maybe I feel that way because I have just had six months without work to allow my subconscious mind to organize things. Or perhaps because I am excited about starting to do out patient palliative care and everything related to it seems shiny and beautiful. Anyway, it's a nice feeling.
In other activities, I'm working on a fifteen minute slide show to make the case for palliative care to primary care doctors. It's astonishing to see that there is almost no primary evidence about outpatient palliative care. This means the kind of low tech studies that some one like me could do would be interesting to other people. Hmmm.
I had the opportunity to tell the story of my second opinion twice today and it made me think about how John told me he had described my story to Dr Stone who said that three cycles of consolidation would be adequate and then when he saw me, he said he thought four would be better. I was thinking about how John had seen me and clearly been impressed with how sick I was with neutropenic fevers where Dr Stone had not. I had lived it and couldn't give a very good description of it to him (also I was not as impressed with how sick I was as John was). Perhaps that made a difference in how Dr Stone viewed the potential complications from a fourth round of chemo. The other thing I was thinking about is how giving second opinions is such a luxury in a way. To have the information that is available in hindsight and get to say "I would have done it a different way," to have the luxury of getting to do the cognitive part of medicine without the heavy lifting of dealing with the patient being scared or falling out of bed or refusing to take the meds you feel would be best. I have only done one general internal medicine second opinion in my life and that was a nursing home patient whose family picked my name at random. It turned out that the patient had an easily fixable problem that hadn't been noticed before so she had a great outcome and I found it a tremendously positive experience. Not quite the same kind of second opinion. My feedback loop was closed in a couple of days when her thinking cleared and Dr Stone's will come years from now when I have or haven't relapsed.
The other interesting experience I had today is related to a couple of years ago, I examined a patient after a non-sexual assault. The county attorney called me today and said they might like me to testify against her assaulter. They asked for my resume as I would be an "expert witness." Gosh, my life never lacks for interest.
For me, for tomorrow, I am hoping for a normal throat, a very non-interesting throat and a nose to go with it. For you, for tomorrow, I will hope for just the right level of interest in the details of your life (remembering the old Chinese curse "may you live in interesting times").

Wednesday, January 9, 2013

Day 207 - the cold continues

Let me start by telling you about yesterday. I did lots of running around for my various jobs, including getting my plants from my old office. I was astonished that only one of them, the baby tears which I was not really too attached to, had died. Anyone who has been in my office in Bedford knows about the black bamboo and how it drops leaves. You could have followed its trail from my old office to the back door to my car. If I had rolled down the window, you could probably have followed it all the way to my office at Home, Health and Hospice. I will take a photo tomorrow so you can see the graceful way it arches across the other plants in the window. It is an extraordinarily good looking plant if you don't mind the mess.
At the end of my day, I went up to Dartmouth to the medical staff meeting. Steve talked about the new compensation model which was interesting because this was my first time at a meeting where I was a specialist and not a primary care doc. He also discussed the various changes afoot in health care payment and what they might mean to Dartmouth, etc. At the end of the meeting, he announced that it was nice to have me back and everyone applauded. I'm not sure I've ever been applauded before just for being alive. It was very touching and made up for a lot of the nuisance of leukemia, not by itself, but the whole way I have felt so embraced and appreciated and loved by my medical community through the whole thing. I feel very fortunate. Thank you.
Today, I am still recovering from my cold. I am more tired than I like to be on my days off, but I guess that's because I don't have as much reserve as I used to have. I will probably temper my enthusiasm for increasing my hours at work because of today's tiredness. I think my current fatigue is a mixture of cancer and cold related fatigue. They say that the best remedy for cancer related fatigue (another CRF) is actually exercise. I think that's true. I did force myself to go for a three mile walk and that actually seemed to help. The dog was more tolerable afterwards too.
There has been some journal reading going on recently. The 1/2/13 JAMA has a couple of interesting things in it. There is a nice essay called "Mind the Outcomes" about how sometimes expensive diagnostic tests that do not change the treatment are not really worth doing. She talks about her sick cat and how she was able to make better choices for the cat than for herself and how the veterinarians might have something to teach human medicine about cost consciousness. The next article I found interesting was about the difference in blood flow after glucose versus fructose in parts of the brain related to appetite and reward. The summary is that glucose ingestion lit up (on functional MRI) the brain in a way suggestive of more satiation than the fructose. Humph. interesting. The next interesting article was a population study of SSRIs in pregnancy in Denmark. 1.6 million singleton births showed in multi-variable analysis that there is not an increased risk of still-birth, neo- or post- natal death associated with SSRI usage in pregnancy. The summary reminds "decisions about the use of SSRIs during pregnancy must take into account other perinatal outcomes and the risks associated with maternal mental illness." Exactly what I've been saying to my patients for ages. The final interesting (IMHO) article has gotten tons of publicity. It is the one that found overweight (where many people such as myself live) is associated with significantly lower all-cause mortality than "normal" weight. Higher BMI than overweight raises mortality risk again. Oops! time to readjust the BMI charts?
For me, for tomorrow, I will wish for courage to revise my previous opinions and wisdom to see when it's needed. I think that's a good wish for any of us, so I'm going to wish that for you, too.

Tuesday, January 8, 2013

Day 206 - results

I'm tired after a stretch day at work which was super super fun, but has left me unable to blog much besides my FLT3 was negative. This means that I have wimpy leukemia and am very, very likely to be in the 35 to 40% of people who do their chemo and never have to think about their leukemia again. Hooray!

Here is a haiku to commemorate the cold that also made today long:

My nose is running;
My headache walks with lead feet
While my stomach jumps.

For me, I'm wishing for a restorative tomorrow. For you, continued avoidance of the virae (virusses?) or, if it's too late for that, a restorative day for you, too.

Monday, January 7, 2013

Day 205 - lungs

 I bet you would like to know how the lung doctor turned out. It was a very easy and painless doctor appointment with good news at the end, so Yeah! First I had a set of pulmonary function tests which were normal. Then I saw the lung doctor, Dr. Tilluckdharry, who said that she thought it all looked like complications of having an infection and that she wanted another CT to be sure it was resolving. She said that I had enough pulmonary reserve as a never smoker who is pretty active that I might not get symptoms from a lung infection until it was really bad so she thought the thing that looked like pneumonia in the past could really have been pneumonia. She thought it was particularly important in my case to make sure things were really moving in the right direction. She also thought--key--that enough time had passed so that if the CT scan did not show improvement, we would need to do something more invasive to sort it out. I really quizzed her on this because I had already done three CTs, each intended to document resolution and each documenting something new that required another CT. Anyway, she convinced me and I got the CT and we compared them next to each other and yippee! the new one did not show anything new and showed partial resolution of everything old, well on its way to being done. She said that I did not need to see her or pulmonary again unless I developed some new symptom.

A recent Annals (Dec 18, 2012) is packed with articles I'd like to recommend to you. I have been so busy with leukemia news and pontificating about non-apologetic doctors that I haven't gotten to it in weeks. Here you go:
1. An article about hospital length of stay and 30 day readmission rate and mortality in the VA. The upshot is over the 14 years in question, all three went down. Is this applicable to the current situation? in non-VA hospitals? Should we be using LOS and readmission rates to determine hospital pay rates? The editorialist thinks definitely maybe.
2. "Does Performance Based Remuneration for Individual Health Care Practitioners Affect Patent Care? A Systematic Review." "outcomes remain largely uncertain." If P4P were a new medication, insurance plans would not pay for it. Just sayin'.
3. A nice article showing that pro-biotics help prevent c.diff in people taking antibiotics, including the statement, "Although results suggested that no important adverse effects occurred in the studied population, the possiblity of serious adverse effects in severely debilitated or immunocompromised populations remains." If I were interested in doing research, I would try to get PCORI to fund a study on the neutropenic diet's efficacy and to find out which of its onerous components were actually helpful.

I think I am getting Ellie's Christmas cold. This will be my first post leukemia virus and I am hoping for an easy time of it for my wish for tomorrow. For you, I think I'll wish for immunity to the collection of virusses that are in circulation right now.

Sunday, January 6, 2013

Day 204 - for me? an apology?

Like yesterday, today was relatively relaxing and devoted to social activities. Dan and I drank coffee, took the dog for a 3 mile hike, had lunch, watched some Downton Abbey and had Thai food. A good day. Sadly, he has to leave tomorrow morning. I won't even be able to see him off at the train station because I am going to Lebanon tomorrow morning to see the pulmonologists.
Why am I seeing a lung doctor? Back when I had my first neutropenic fever, when it wouldn't go away after several days of the right antibiotics, they sent me down for a CT of my chest, abdomen and pelvis. The chest CT showed a lung nodule so we repeated it a month later. The repeat showed two nodules so we repeated it a month later. The re-repeat showed the nodules had gone away, but the CT scan looked like I had a pretty good pneumonia. I had no symptoms of any sort. Dr. Hill says all of this stuff can be consistent with chemotherapy effects to the lung so rather than CT'ing me enough times to really give me lung cancer, I'm going to see a pulmonologist. I suspect she is going to want a re-re-reCT in three months which will be fine because everything should be all settled out by then. I sort of want to go to the lab and ask them to hand my slides and blocks to me so at least I know where they are.
An interesting thing about this is that they taught us in medical school that once a mistake is made with a patient, doctors/nurses feel badly about it and tend to avoid the patient. This compounds the problem because now you have a patient who may or may not know something has gone awry (obviously, in this case, I know) and who is feeling relatively neglected compared to previous treatment. I must admit to being very disappointed that John has not called me to say, "Gosh, I'm sorry; I forgot to order your lab. You know, I was on service over the holidays and it's no excuse, but I have a little kid and was being pulled in way too many directions. I had asked the pathologist to run the lab, but it's a bit off the usual stuff he does and he didn't understand. Anyway, I didn't follow up on it because I was distracted by the holidays. Thank you for tracking it down." That I could totally forgive because I really want to be happy with John; I am so appreciative of the care he provided for me at the beginning in particular of my treatment which I think was way less traumatic than it could have been for me because he did communicate well with me. But I know some one has made a mistake and I know the buck stops with the attending doctor because he did not track down why he didn't get a result from a lab that he ordered--or--he forgot to order the lab. Now I'm left wondering why I'm not getting an apology call. My most likely explanation is that he feels badly and thinks that ignoring me will make the bad feeling go away sooner. Other possibilities include that he thinks I didn't notice a mistake was made (some insult to go with your mistake, Mary?), that he doesn't realize I deserve an apology for the mistake (doubtful as he knew when to apologize before), that he figures he'll just apologize when he sees me in two weeks at my appointment.
Perhaps in some cases, it is good to let the other person calm down for a while after you make a mistake, but medical mistakes are not an example of such a case. I think the apology should be given as soon as the mistake is discovered. Even though it's tough to say, "I was wrong. I'm sorry. I made a mistake. I'm not quite sure what I was thinking." or whatever you have to say, it just gets tougher for patients to hear it as time goes by. So, now you're in a situation where first you have to apologize for your mistake and second you have to apologize for not apologizing sooner. The relationship can be salvaged through even big mistakes (what has happened to me I would classify as little to medium mistakes) as long as it is clear that the provider wants to salvage the relationship. An apology is probably the clearest way to say that the patient is important to the provider despite the fact that the provider has made a mistake. I'm hopeful that the apology is forthcoming.
For me, for tomorrow, I am hoping that my pulmonology vsit will be a painless as I am imagining. For you, for tomorrow, I hope all your best case assumptions are true.

Saturday, January 5, 2013

Day 203 - Dan!

The last two days have been so filled with leukemia news that I have not even mentioned that my friend, Dan, from high school is here visiting from Pennsylvania. He took the train to Boston and then met us at the Dana Farber on Wednesday after our marathon visit. He spent Thursday and Friday in Boston with his aunt, but today we got to spend some time together.

Dan was able to witness the second post-chemo haircut today. He was very disappointed because there was only one person in the barbershop besides us and Jim and they were not including us in the conversation, not actively excluding us, but we just couldn't find a way in. Then another man came in who had a really interesting job in turning broken hospitals around. Dan and he chatted a while and then it was my turn for hair cut. Jim introduced me to the person who had been getting his hair cut, John Sununu. Dan felt the shop had lived up to its reputation at that point. I got a great haircut as before and as before it was $5. Some day soon, Jim will be allowed to cut the rest of my hair, for now it's just the ears and back.

After that, we went to Beach Pea and I had their best: mozzarella, basil leaves and tomatoes grilled on a baguette, followed by a lemon raspberry cupcake. Then at noon, Tommie, Dan and I went to see the NY Opera simulcast of Les Troyen by Berlioz. It is the story of the Aeneid which I had not even thought about since high school so I was quite surprised by the mass suicide scene of most of the Trojan women at the end of act I. We stayed for only the first act (90 minutes). The whole thing lasted five and a half hours. It was very funny because Aeneus flees to Italy to found a new empire and the whole cast is singing "Italia! Italia!" There are 140 people in the chorus, including two dozen children. It is a little like being at a soccer game except for the orchestra.

The opera opens with the Trojans waking up and singing about how wonderful it was that the war was over. How glorious peace was. It was very touching because it's the story about the Trojan horse and the destruction of Troy and we know what comes next. Remember Cassandra? Her deal is that for some reason, she was cursed to be an accurate prophet, but no one believes her ever. She tells the people in her city not to bring the horse in the city gates, that doing it will bring about the end of their civilization. I hadn't really thought much before about how awful her fate was. She has this nice scene with her love where she urges him to flee because she knows he will die if he stays, but he refuses to go, wanting to stay and protect her. She sees she can't convince him to leave and accepts that they are both going to die the next day, saying "then accept a bride's promise." It is really a very touching scene. Not so touching, however, that we were going to stay for four more hours of it.

Dan and I wandered around Portsmouth and got chocolate, coffee, mustard, a present for Dan's partner (sh! don't tell!), etc. I took Dan by Nancy's cheese shop because no trip to the Seacoast of New Hampshire is complete without one. Then we went home and Dan made us dinner while I mostly blogged and just helped the tiniest bit.

Want to see a picture of Dan? Want to see my new haircut? Want to see the wall behind my computer spot? Sure, you do.

When we were in high school, people used to think we were siblings a lot. I'm not sure I can see it at this point. I do know that I am so glad Dan came to visit me and so happy he has been my friend all of these years. We have sometimes gone a couple of years without seeing each other, but have rarely gone more than a few months without talking. We have both seen each other through a lot of adventures over the years.

For me, for tomorrow, I am going to hope for lots of fun and lots of good conversations with Dan. For you, for tomorrow, I will hope for good friendships.

Friday, January 4, 2013

Day 202 - in which I go redline

Yesterday, I said "Tomorrow, my job is to track." I had no idea how taxing the tracking would be. Since DHC sent all my material to the Dana Farber, but didn't send my diagnosis slides (6/14/12), I knew my diagnosis slides were at CMC. I called there and they said, "Nope, they're at DHC." I called back up to Lebanon and they said, "No, we sent them back on August 12'th." I called CMC back and they said, "Yes and we sent them to Dr. Cancion in Lebanon on November 30'th." I called Lebanon and asked for Dr Cancion who was not in and left a message on his answering machine. After an hour passed, I called Lebanon back and asked for Dr Cancion who answered and had a hard time at first understanding what I wanted. He suggested that I could call Dr. Hill instead of him to get my test results. Eventually I was able to explain that I wanted the block (that's the fancy name for the material evidently; people seemed to respond better when I asked for the block instead of the slides) and he told me didn't know if my material was at Lebanon or not, but his tech would know and gave me her name and phone number.

She said that she did have the block, would I like it sent somewhere? NO! Don't touch it! I found it! She then told me that a send out test had been done on it, but she couldn't give me the results because she is a tech and techs can't give those out. She could tell me that it was the FLT3 result. Granted, I am pretty sure the FLT3 result is negative, but if it's not, then I would be getting a bone marrow transplant. The stakes for my life, both near term in terms of needing more treatment and long term in terms of how cooperative my leukemia was likely to be are pretty large. Negative and I continue as I am. Positive and the next six months are devoted to getting and recovering from a bone marrow transplant. I thought I was doing well to be polite and not demand to speak to her supervisor seeing as how the lab results actually belong to me and I should be able to get them.

I also pointed out to her as a process improvement suggestion that it would be much better if the pathology lab knew what specimens they had in the molecular pathology lab, like maybe if they shared their log books. She told me that what had happened was that the sample had been sent from CMC to the pathologist rather than to the lab so it somehow bypassed the usual logging in. I'm really fortunate that the person who happened to know where my sample was located was at work today, I guess.

I called Dr. Hill's office and the secretary told me she would get a message to Dr. Hill and some one would call me back. The nurse called back an hour later and told me she had talked with Dr Hill who was puzzled about why I'd want a FLT3 done from my remission marrow done in November. I explain, no, I wanted it done on the marrow that *arrived* in November and, in fact, that the lab tech told me the lab had been done. She searched through the chart and couldn't find it. She told me she'd call me back. An hour later, she told me that the nurse practitioner had tried to find it and couldn't and asked some more questions. She told me she'd call back. A few minutes later, I realized that if the nurse called the lab tech who told me she saw the results, that the lab tech could show the nurse where it was in the chart. I can, by the way, be totally sympathetic with the nurse about this. DHC's electronic medical record can be tough to use and every job function gets a different view so what the lab tech saw might be different from what the nurse had access to and things can be very difficult to find because you had a different set of flags on when you found it the first time. Anyway, she called back about an hour later and told me that the lab tech said it would be done by the end of the week. I asked her if this was really a test that took six weeks to run. She told me that she didn't know and I felt a little bad for not being entirely nice because of course she had nothing to do with it before today.

Who knows what it means for sure, but the summary statement is that I am glad I decided to track it down because I am not sure the test would ever have been run and at some point, someone probably would have wondered why this dusty set of slides was sitting around in Lebanon and sent them back to CMC, but they would have made a typing error and they would have gone to a different CMC, the Charlotte Medical Center, who would have recorded and filed them, but I'd never have been able to find them.

I can tell you that I was pretty upset about this most of the day. Just in retelling it, I can feel that my jaws are tightening enough that my teeth don't quite line up.

I guess I'll be getting a result, maybe, at the end of next week. Unless the sample is lost, the lab floods, people forget to run it, my slides were mislabelled or they don't remember to call and give me the results. OK, so this was frustrating for me and I didn't have a whole lot of other stuff going on today and I have a fair bit of health care system savvy and I have the doctor card that gets me better treatment. Pity the poor, slightly hard of hearing older person who is not very well educated and ahs to try to track this down. I suspect they would give up after two or three phone calls and it would probably never get done. Or maybe they'd mention it at their next PCP appointment and that doc would have their office staff track it down, taking the same six or so hours it took me, but now the slides have been sent to storage and it will take a week to get them back.

Why is health care so expensive? Today's journey certainly points out a few possibilities: non-interoperable systems, not all components of the system functioning reliably, difficulties ordering non-standard labs and procedures (and so much of cancer care is non-standard), on and on.

The thing about this test is that it's not, say, a thyroid malfunctioning which will make you feel miserable, but is unlikely to kill you even if the test results are lost for several years. It is also a test result that can only be run on a particular diagnostic material the entire quantity of which would fit in a shot glass. There is no more available or any way to get more except for time travel.

You can imagine why I was pretty revved up for most of today about it and really upset. We were going to talk about Annals, but that will have to wait for tomorrow.

Thursday, January 3, 2013

Day 201 - part the second

Please start with the other half of this day.
The important part about what he said had to do with the gene mutations. There are two mutations that are important in leukemia like mine where the chromosomes look normal under the microscope: NPM1 and FLT3. NPM1 if positive is a good prognostic sign and FLT3 if positive is a bad prognostic sign. A person can have either or both positive in any combination. The ideal time to do these tests is at diagnosis when the sample is filled with leukemia cells with their little leukemic genes. For complicated reasons, I didn't get the tests run then, but the tests were run on my day 14 marrow which was "empty." (remember that from all those months ago? This was done after the chemo to make sure that "the garden had been emptied of flowers and weeds".) The marrow could not have been completely "empty" or I would never have recovered marrow function, it just looks empty. That also holds true for the leukemia, that most of the leukemia was killed off, but it is well known that if you stop therapy there, the leukemia will reliably come back so there are some leukemia cells in there, even though we can't see them. There were enough cells in there for the NPM1 mutation to be detected in my case. That's the good prognosis one--yeah! The bad prognosis one, FLT3, was not detected. This could mean that it wasn't there (a true negative) or that it was there, but not in the poor quality sample we gave the lab (a false negative). Most people with NPM1+ are FLT3 negative so the odds are about 3:1 that I am FLT3 negative.
If it was truly negative, then I am truly done with chemo and at very low risk to relapse. If it was falsely negative, then I would be at much higher risk to relapse and he would recommend more treatment. My leukemia has behaved well, been responsive to chemo so that also favors FLT3 negative. However, none of these things is proof. If the proper sample of my original diagnostic material can be tracked down, he has a fellow who can process it and retrieve the true FLT3 or not status from the vault, so to speak. My job tomorrow is to track.
The other thing he said which was very interesting and a prime example of medical reasoning was that if I had come to see him in August or even early December, he would have advocated for a fourth round of chemo for me, but now as I was six weeks past chemo with normal labs, I had already proven that I would not relapse quickly so it made him more confident that my leukemia had been adequately treated with three rounds of chemo. Each day that I go without relapsing makes it less likely that I will relapse ever. The risk is front loaded, in other words, and is less with each passing day. It's a funnily reassuring way to look at it.
The one thing about people who give second opinions that is important to remember is that he did not see how sick I was when I had my neutropenic fevers. I was never at risk truly, but that is the sort of thing one can only know for sure in retrospect. I think part of why John lost his enthusiasm for more chemo for me is that I kept getting those stupid infections and he was afraid that one of them might land me in the ICU or worse.
In those eleven vials of blood were a bunch of results I got yesterday, normal blood count, thyroid, liver, kidney, etc. and a few pending tests too. I think this means that I will (hopefully) hear from him about the FLT3 and probably about a few more obscure send out blood tests. Doesn't everyone want to know their erythropoetin level?
In other news, today was a pleasant day for me and I have nothing more to say about it after this little essay on leukemia mutations.
For me, for tomorrow, I will hope for lots of ideal diagnostic material that can be found easily, shipped without being lost or mislaid and tested reliably. After all that, I will hope for a negative test result. For you, a simpler wish, that you are free from logistical hassles and all your news is good.

Day 201 - the second opinion for real

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

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