Day 259 - the loom whisperer

The roof with just a little snow. I would like to figure out how to depict this in woven form.

My loom is called a Jane Louet. The person who designed it is named Jane Stafford and she runs a nice little weaving shop in BC. Or, in the interest of internet honesty, what appears from the pictures to be a nice little weaving shop. I sent her email and learned a bunch of interesting stuff. My loom was bought in the first year of manufacture of these looms and many (most?) people who own this loom use it as a second loom because it is portable. She thinks mine may be one of the harder used Jane looms as well as one of the longest used ones. On top of that, what do I favor? Non-elastic closely set cotton yarn. The windows piece is set at 32 ends/inch. That means that each harness has 4 ends / inch across 14 inches. That's a lot of pulling. I was surprised to have a cord break and even more surprised when I looked and saw a few others fraying. Jane said that it was not a known problem, but for the reasons above, I might be a pioneer. At any rate, she is sending a replacement set of eight cords as well as the elastic things that provide the counter tension. She also suggested not tightening it quite so much next time. Good advice. I did take the windows piece off the loom and like it quite well. It's not done being finished yet so I'll wait a day or two to post it here.

In other exciting news, I took a nap on the couch today. The sun was at just the right angle to come in the window and shine on my face. I sure hope it's right that house window glass takes the ultraviolet out of sun because it shone the heck out of my pre-skin cancer spot.


In further edifying news, the 2/19/13 Annals has a nice article about "Assessing Bias in Studies of Prognostic Factors." Using that article, I would not have been misled in my review of the article where I was so enamored of a negative study that I totally missed the boat on how it was super biased. Ah, well, live and learn. I doubt Annals will ever let me near another article to review, but maybe someone else will and now I've got a nice checklist for bias.

Additionally, there is a great article about "Acupuncture in Patients with Seasonal Allergic Rhinitis." The net is that real acupuncture helps more than sham acupuncture and rescue medicine alone, but it may not be enough of a decline to be noticeable clinically. I'll have to take their word on the significance of the scale they used, but they said that a decline of 1 point was about what you get out of 10 mg of zyrtec. Sham vs real acupuncture was 0.5 points different and real vs rescue meds only was 0.7 points difference. It seems to me that almost as effective as the usual dose of zyrtec would be clinically significant. The real reason I am drawing your attention, however, is the editorial. They talk about how very few surgical procedures have been subjected to trials where patients have a "sham" version of the procedure done. They then note that many other trials have been shown acupuncture to be more effective than no acupuncture but not sham acupuncture. In those cases, the answer to the question of whether acupuncture is effective depends in large part on whether one considers a procedural-based intervention to be effective relative to the absence of that intervention, or relative to an artificial course of treatment that would never be administered in clinical practice and may not be physiologically intert." They discuss how trials of acupuncture vs nothing are of interest to insurers, patients and doctors, but trials of sham acupuncture are intended to tease out the placebo effects. The Harvard Medical School offers a $4,000 (last time I checked) CME course in learning to do acupuncture. I bet the CME course in sham acupuncture is a lot cheaper. A funny thing about this topic and me is that I do have an opinion about good acupuncture practitioners in the area. You need a referral? Gimme a call.

A long time ago (when Emily was a baby), I kept getting "sinus infections." I went to see an acupuncturist in Berkeley, CA where we lived at the time and she did her thing a few times. I ended up with an ear infection x 1 right after the course of acupuncture and then no more sinus or ear trouble for a lot of years. N = 1. If people have the ability to get to my favorite acupuncturist and nothing else has worked well enough, I do suggest trying acupuncture for lots of things. (not metastatic cancer, however, but yes to pain from metastatic cancer) Sometimes it's helpful and sometimes it's not, just like lots of things I recommend from the pharmacy.

Well, that's a cheery, non-controversial end to today's post. I am hoping for tomorrow to see this virus in my rear view mirror. For you, too, I hope you do not get any new viruses and that you get over any you have picked up very quickly.

we read journals

Remember the nice article about how most people getting chemo for incurable cancers thought their chemo had a good chance of curing them? There were a bunch of great letter to the editor in the 1/31/13 NEJM about that article. The first one concludes with "Thus, interpretation of patient-survey items must account for the fact that what we think we are asking patients may be different than what patients mean by their responses." which I think hits the nail on the head with that issue. The second letter mentions that "high patient-satisfaction ratings are associated with poor patient outcomes and increased costs of care. Although we cannot assume causality, these findings arouse concern." As many doctors know, several payors are suggesting patient satisfaction as a metric to help determine what physicians are paid as part of "pay for performance." I'm not sure that that is in anyone's best interest at this point.
The JAMA from 2/6/13 also has a very newsworthy article in it about "Change in End-of-Life Care for Medicare Beneficiaries." There are several articles in the popular press that summarize and extend it. I think a summary might be that care of medicare beneficiaries who die is becoming more aggressive in some ways with more ICU usage and more transfers at end of life in 2009 than in 2000, but more are signing onto hospice. The average Medicare decedent spent 6.6 of their last 30 days on hospice. I think the write who talked about people using hospice as an add-on after aggressive care was right. That issue also has a nice article on the medical issues associated with transgenderism. I have had a handful of transgendered patients over the years and have had a hard time finding useful information. It's nice that they have put the basic issues together for providers. Finally, a short article putting the evidence for opioids for arthritis pain together for clinicians.
It turns out that the article I reviewed was rejected which I think was the right decision (although I argued for its publication, having overlooked its biggest flaw in favor of its other charms). I suspect they will find a less prestigious journal to publish it; I hope so at least.

Day 235 - some milestones

Today had another milestone in it. I had to call a pharmacy to coordinate a patient's meds and for the first time in seven months, I pressed "2 if you are a doctor." I've been calling pharmacies a lot in the past few months--a real lot--and have had to press the patient number. I always hear the doctor number, taunting me, reminding me that I am not doing my profession, but have behaved well and not pressed it when I was calling as a patient. It was very exciting to press the doctor number again.
Another milestone is that I watched a patient of mine get on a gurney and get loaded up in an ambulance today. I have seen patients on gurneys since being back, but the last person I saw get on a gurney was me. He did much better than I did both times as he was able to stand and pivot for transfer. I realized as I watched him get in the ambulance that I was a little sad that both times I'd been in an ambulance, I was too sick to enjoy it. I suppose that would be the definition of a wasteful ambulance ride: if you are well enough to enjoy the scenery and the cool technology in the rig, you are well enough to get in a regular car.
The 1/31/13 NEJM has the article about myths, presumptions and facts about obesity that has been widely quoted. Sadly, it's not a free text article so I didn't link. I really think we know very little about obesity and weight loss, but we like to pretend we do.
Last night, I had a really nice conversation with my friend, Rob, about patients who are DNR having to reverse their DNR status before they have surgery or procedures. Several years ago, I had a patient who had reversed his DNR status for a procedure code during said procedure. I got to thinking about that day and how I had had 15 or so other patients to care for even though having a very nice, highly functional patient die, have attempted CPR and then have to talk with his elderly wife (who fortunately was not at all surprised) was a fairly heavy duty day, emotionally speaking, I had to keep going: admit, discharge, evaluate differential diagnoses, talk with patients and families, adjust meds, call consults, etc. for hours more. As I told Rob about it, I noticed my hands were shaking. There is so much stress to how we have to handle things sometimes--just shove them aside and keep going. I find it really a pleasant change that in hospice, as a more team oriented specialty, there are more people who understand the emotional situation I might be in with the patient in room E507 and who can then offer me some support. I think hospice providers are also trained more in providing emotional support and can offer it to fellow staff more effectively than non-hospice trained folks. I am very happy to be where I am. (Unrelated, but I do really find I miss hospitalist work.)
Today is day #3 of a so far 18 hour week. I am glad I will not be working tomorrow as I'm pretty excited about my bed tonight.
For me, for tomorrow, I hope only for restoration. For you, for tomorrow, restoration if you need it, otherwise, whatever you need instead.

Day 234 - bring on the normal!

Today had lots of very nice little parts. Work was good; a couple of the patients had happy surprises for me. Then I got to have coffee with Jeanne-Marie who I hadn't seen in ages and who seems to be doing stellarly. To round out my afternoon, Ellie told me the entire plot of the most recent book she's read which involves a girl and her crush time traveling to pre-Civil War times in the U.S. It's funny how sometimes pre-teeners really don't want to talk at all and sometimes they can keep going with breaks only to inhale for twenty minutes.
There isn't a whole lot to report on today, just nice normal normalness so let me point out a couple of nice articles in the 1/24/13 NEJM. There is a nice viewpoint which they summarize as "Awaiting surgery for a malignant pleural effusion, the man is in pain and looks much older than his 50 years. The medical oncologist thinks he's dying. But the surgeon believes the procedure will help, and medical hierarchy discourages questioning of such decisions." I think I have played the part of everyone in this tableau (except the patient, hopefully). Go read it; it's worth the ten or fifteen minutes it takes. One of the things he doesn't talk about that I think is operative in this case is the "herd mentality" where the more people involved in a patient's care, the less likely any particular one is to speak up about things that seem to be going astray. I've had the experience myself where I feel like the patient has five specialists involved in their care and they all evidently think this is OK so why should I, the lowly generalist, make my differing opinion known. There are times I have wished that I had made my lowly opinion known and times it was just as good I hadn't. I try now not to be swayed and to make sure that things make sense to me in any case I'm involved in, but sometimes it's tough. Now that I think about it, I've had that experience most frequently as a hospitalist. I wonder if that is a typical hospitalist feeling or if I'm just special that way. When I've been in the office, I really feel like the internal medicine slogan of "internists: doctors who specialize in you" is true; that I may not be as expert in any medical field as the five specialists this patient is seeing, but chances are I know the patient better than any of their specialists and often I am the only person who understands what all the specialists have to say.
Yesterday, when I ran into some of my old pals, one of them is a specialist who has sent me a few patients all of whom I was very attached to. As we talked about them, I felt a real sense of sadness and real missing of my old primary care practice.
Back to the NEJM. There are a couple of nice articles on smoking, too. This one is on the hazards of smoking and benefits of cessation and has lots of cool statistics for the U.S. like this: "smokers lose at least one decade of life expectancy, as compared with those hwo have never smoked. Cessation before the age of 40 years reduces the risk of death associated with continued smoking by about 90%." Check out figure 2 which shows the survival curves of never smokers versus current smokers. At age 80, it's 70% versus 18%. Whoa, huh? There's also a nice "clinical practice" article about alcohol use. The CPC is a good one and, I am embarrassed to say, one that I should have figured out pretty early on and completely missed. A good reminder to me about that particular disease. (I don't want to say anything more in case you're going to read it; I don't want to spoil it for you.)
Tomorrow is planned to be another really lovely normal normal day. I'm all for it.
I'm going to hope for continued pleasant normalness for me and for you, I will hope that you are having pleasant normalness and that it continues. If not, I will hope that you are able to get to pleasant normalness.

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.

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.

Location:Day 218 - mostly journals

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.

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.

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.

Day 193 - non inferiority

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

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

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

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

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

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

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

Day 190 - pain is a cuase of delirium

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

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

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

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

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

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

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

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

Day 189 - reading recs

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

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

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

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

Day 173 - journal recs and more

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

About half of the warp I'm working on now.

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

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

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

As for news of the previously leukemic body, I was a little bit sore from yesterday's exertions so I decided to take today off from the gym. I am looking forward to Planet Fitness tomorrow. I also have my second opinion date: January 2. I may have mentioned that I have to see pulmonary too and am working on getting that set up (the reason is that my CT scan is still not normal. Every time we look, it's abnormal in a different way so I'm thinking none of it can be too bad. John thinks it is probably post-chemo stuff. I was very happy to see the nodules go away, speaking of screening for lung cancer).

I haven't barfed in 48 hours. My family is so proud of me.

Since this a a complete pot pourri entry, here is a nice video about kids who play instruments in Paraguay.

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

11/20/12 Annals

The 11/20/12 Annals is not one of their better issues, IMHO. There are a bunch of articles that aren't all that interesting to me and then there are two sets of recommendations, one for the diagnosis of stable ischemic heart disease and one for its management. They're kind of long and detailed, but include nice algorithm charts. The big surprise for me was all the emphasis they put on exercise EKG as the initial test for people of intermediate probability. I was taught that an exercise EKG is not very sensitive or specific and in my career, I may have ordered two. The editorialist talks about this being a big surprise for him as well (also there is what I can only assume is a typo in the editorial: he says "women" but the recommendations clearly say "patient"). Otherwise, the emphasis on medical management is, if anything, even stronger than it has been in recent recommendations which is nice to see for a general internist.

Additionally, there was an article about pharmacy dispensation of discontinued meds. When I stop a med in the office, the EMR does not inform the pharmacy that I want the patient to stop this med and sometimes the pharmacist can reasonably be expected to figure out to stop it (I send an rx for a higher dose of the same med or I send an rx for a different med of the same class), but sometimes there is no way they could possibly know and we all have to rely on the patient refusing the med when it gets filled for them. This is not a very robust system, clearly with patients of marginal literacy of all kinds as well as just generally overwhelmed or confused and on ten different meds. Anyway, these researchers were able to track down for about half the prescriptions they were interested in whether or not they were dispensed after a discontinuation order was put in the EMR and about 1.5% of the meds were dispensed an average of once over the next twelve months. Wow! It's both surprising that the number is so low (the pharmacists are doing such a good job of reading the doctors minds or calling for clarification) and surprising that the number is so high as these are potentially serious errors with dangerous meds (antiplatelet, antihypertensives, hypoglycemics). I try to include notes to the pharmacist about meds I'm discontinuing, but I don't do it reliably. Yikes! I just never thought about this as an Achilles heel of prescribing.

Day 162 - this n that

Because it has been overused for reheating Thanksgiving leftovers, our microwave broke yesterday. I went to the mall (gag) and bought a new one after checking out the reviews on amazon. I wanted to see it before I bought it. That and three miles of dog walking pretty much used up my afternoon.

Other activities for the day were hanging out with Emily, reading this week's NEJM and a little weaving. This week's NEJM has a really interesting article on over-diagnosis in breast cancer. The idea is they looked at the population breast cancer data from SEER and noted that while early stage breast cancer diagnoses have gone way up since mammograms have become popular, late stage breast cancer diagnoses have only gone down a little bit. They do a bunch of fancy math that I can't follow and conclude that somewhere around 30% of early breast cancers are actually overdiagnosis of breast cancers that will never progress clinically. Wow! They make a pretty good case for mammogram as not a great screening test since detecting early cancers does not decrease the burden of advanced disease much. There was a nice op-ed piece in the NYT to go with this where the author pointed out how horrible a "quality measure" mammogram rate is. The idea is that if mammograms are not great screening tests, then the imperative to get them is not that strong and it is an individual patient/doctor decision so paying doctors or systems more for having a higher percentage of women with mammos would be rewarding systems for not being particularly patient centered.

The other news for today is that my labs from Friday came back. I am still quite anemic at 9.3, but my white count is 6.3 and my platelets are 330. What a relatively normal CBC that is! I can't wait to see how energetic and stamina-filled I feel at 12 or 13.

That is it for news from here for today. I'm hoping for more energy and more red cells tomorrow. (more, more, more!) For you, I hope for more of what you need most.

Day 156 - slow recovery

The whole recovery enterprise is very interesting. If you had asked me seven months ago what I would accomplish if I didn't have to go to work for five months, I would have laid out wonders: a couple hours a day on the viola, maybe pick the banjo back up, a little bit of time for weaving, taking care of Ellie, exercise and probably I would have time to cook delicious complicated nightly meals and freeze half of what I cooked for when I have to go back to work, maybe some travel and lots of reading. Instead, a typical day like today consists of a little weaving, a lot of napping, some journal reading, a little grocery shopping so that I can hopefully do some cooking Tuesday or Wednesday, some Ellie care and a 1.9 mile walk.

I was trying to figure out what I *do* with all this time, so every time today I was not *doing* something, I tried to notice what I was doing. I realized that I often find myself staring into middle space, daydreaming about nothing in particular. I think I told you that one of the nurses gave me the definition of tired as "you have to really make yourself do things." This is about as good as I've heard. Even though if you asked me if I were tired, I would say "no," yet I find myself acting as though I'm tired. Is it my mind that is tired? Is it all over tiredness because I'm anemic and I can't recognize it somehow? Is my mind just having a hard time focussing? There is something to this recovery stuff; the reason they give you time off from work to do it is that it's like a full time job!

I am getting stronger. You can imagine how much I hated it when I climbed two flights of stairs and had to lie on the bed, panting for a few minutes to recover. Today, I climbed the stairs carrying a blanket and was able to spread it out when I got to the top without having to stop for a break. A lot of panting was heard, however. I also can walk 1.9 miles which is a nice distance. On the uphill part through downtown, I go so slowly that I am expecting some one to rush out from one of the stores with their walker and say, "Here, you need this more than me." On the flat and the downhill, I am getting closer to a normal pace. When I first left the hospital, I had to walk so slowly for everything. The cars would stop for me when I'd walk downtown and I literally could not hurry across the street to get out of their way faster. These signs of improvement are extremely welcome. I have a hard time with being less than 100% independent. This has been a tough five months for me.

Maggie is about 70% back to normal. She spent her whole day lying on the couch, but did get up to greet people as they came home so that is progress. The vet said to feed her two tablespoons of bland diet ("here's how to cook the rice and chicken"--actually, that's not happening. Her kibble is rice and chicken) every four hours (that's not happening. I'll feed her six times a day during the hours I am awake). It's a good thing I am more compliant with my own care than Maggie's. She said to do this for four days (also not happening--four days into 12 tablespoons of food a day, Maggie would be eating the furniture). Anyway, she's getting better with the semi-vet ordered diet so that's what we have.

Wanna hear what's good in this week's NEJM? (11/15/12) There is a nice article about the "Reciprocity of Recognition" by Rita Charon (the narrative medicine person) who talks about how a medical encounter "provides the ground for reciprocal recognition. Each comes to know things about the other that help the other, while being granted a view of self. Through the power of attentive medical practice, patients will see themselves in their doctor's gaze." I think this is absolutely right and very beautiful. That it is reciprocal is part of the real charm of medicine. Go read the whole thing.

There is a nice article about Lyme disease. If some one gets a second round of erythema migrans is it a relapse or a re-infection? The researchers sequenced the DNA of the B. burgdorferi in each of 22 cases and it was always a new strain, so it seems a second episode is much more likely to be a new infection than a relapse. Another hit to the folks who prescribe ceftriaxone for three years at a time.

There is a great CPC which illustrates why general internal medicine is the coolest. It really demonstrates that general internal medicine is a real branch of internal medicine with special skills. I really enjoyed it.

For tomorrow, I am hoping for continued recovery for myself. For you, I will hope for any recovery you would like to progress in your life.

Day 138 - day? what day?

It is not entirely clear to me where today went. There was the two hour nap, the one hour nap, the trip to Manchester for labs, seeing my therapist and I'm not sure what else I might have done today, i.e., not much.

Patrick started the day off with an early text asking if I wanted to meet for coffee. At first I thought I wouldn't be able to because I was still in my pajamas, but then I remembered I didn't have to do my hair so I figured I could get dressed and walk there in fifteen minutes.

Next, Tommie and I headed off to Manchester for labs which turned out completely, disappointingly without anything to fix. My hemoglobin is stable at 8.7 (which is low--12 is normal, but not so low that I need a transfusion) and my platelets were 51 (also low, but not so low that I need a transfusion). There is a shortage of blood components now because of the hurricane so I am happy to know that I am not needing any today. I suspect that I will need platelets by Monday, but we'll see. I am wondering if this will be a consolidation without needing red blood cells at all. My ANC was 170 which means that I am correct to be on the neutropenic diet (grumble).

When I got home it seemed like a nap was in order, then lunch (more delicious spaghetti; thank you, John!) and off to visit my therapist. I didn't intend to take a nap when I got home, but I lay down at 2 o'clock and the next thing I knew Ellie was clumping up the stairs at 4 o'clock home from school. I guess I have a lot of repair and rebuilding that needs to go on internally.

I also read this week's NEJM, hot off the press, and found the article about the costs of health care interesting, but did not really find anything compelling enough to recommend. The cost article looked at the expenses of each HSA and each HRR. HRR's are made up of HSA's. They found that not all the most expensive HSAs are in the most expensive HRRs. Medicare is proposing to control costs by adjusting the rates they pay each HRR. If the fees are adjusted at the HRR level and costs are produced at the HSA (or lower) level and there is only a vague correlation between the expensive HRRs and HSAs, the policy is unlikely to work too well. Not the clearest explanation of the article, but it was only marginally interesting to me so that's all it gets.

I didn't mention yesterday because there was no place that it seemed to fit that the anxiety dreams had started up again for this cycle. I bet when the intracellular contents of all my dying marrow cells start circulating that some of them are psychoactive and that is what brings on the anxiety dreams. They always appear and disappear at about the same time in the cycle, along with the time period that I think is the big die off and clean up. Tommie says that she thinks it's my brain just doing its best to make sure I know I've been poisoned which I think is another good way to look at it.

Tomorrow I am spared a drive to Lebanon, which is nice, but don't get to visit Shelley, which is not as nice. Worse, when will she get her "get well soon" present? On the other hand, there is something to be said for home and only my own marrow products.

For me, for tomorrow, I am hoping for more quiet recovery. For you, I don't know; you might not want a quiet day, especially since it's Friday. If you'd like quiet, I wish that for you. If you are hoping for excitement, that is my wish for you.

Day 137 - journals and possible chemo brains

Today I spent as usual: weaving, napping, reading. Diane came over with a huge bowl of delicious spaghetti sauce and meatballs and a package of noodles. It turns out that both Ellie and I feel John is a good spaghetti sauce chef. I sat down and ate two delcious bowls right away. Ellie may have had three. That good cook gene has clearly been transmitted to the next generation.

Ellie's blanket is coming along nicely. I am not sure how much yardage is finished yet, but I've been working on it long enough to have a warp thread break so that's a while. It looks really good; I am very proud of it.

The dogs were very silly today. Kita went with Barbara and Maggie and the rest of the crew today and both dogs came back even more exhausted than usual. Kita, smaller by half, but dominant by full, got to sleep in Maggie's warm, soft doggie bed. Maggie slept in the kitchen where she could keep a half awake eye on the meatballs. Kate came by to say hi and it turns out that one of her dogs has bilateral trigeminal neuritis. Who knew? Sort of like dog Bell palsy. I am waiting for some one with cattle to tell me their cow has it too.

I am matching the dogs well and am pretty tired myself. I have runs of energy and then lie around doing nothing. I did walk downtown twice in search of the perfect get well present for Shelley which I ultimately found. It's nice to put my newly and dearly earned knowledge of being a patient to use.

This week's NEJM has two articles that are well worth most people's time. There is an excellent review of irritable bowel syndrome. It is really the best thing I have seen written on IBS anywhere, ever (granted, I am not up to date on the IBS literature). If you are even marginally interested in the syndrome, read the article.

The other article has been in the news a lot and is really interesting: "Patients' Expectations about Effect of Chemotherapy for Advanced Cancer." What the researchers did is ask a whole bunch of people with metastatic lung or colon cancer if they thought they chemo they had decided to take was very likely, somewhat likely, a little likely, not at all likely or unlikely to "cure" their cancer. Using the usual definition of "cure," in this case, the correct answer is "unlikely," and around 30% of patients with advanced lung cancer and 20% of patients with advanced colon cancer got it right. 25% of patients with advanced lung cancer and 35% of patients with advanced colon cancer thought palliative chemo was very likely to cure them with another 25 and 35% thinking "somewhat likely." There is a very nice editorial which lays everything out very nicely, but I think the whole question really boils down to "if you ask a dying person what they believe will be the outcome of a treatment they have already decided to take, what do you think they will say?"

I imagine that people would have reframed their expectations at that point and hope for a "cure," like "more time" or "the spots will get smaller for a while" and, of course, they believe that the chemo can deliver that "cure" to them (the rest of the statistics support that patients understand they can expect symptom relief and life extension from palliative chemo). OTOH, the editorialist points out that 25% of Medicare's spending is in the last year of life. If patients are accepting palliative chemo hoping for a chance at eradication without return, who would not accept it for life prolongation/symptom relief, this is a problem.

The authors reference a study showing that patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure. When I read that, I tried to imagine how I would feel if I were in that study. It would depend on what "substantial increase in life expectancy" meant and if there were some other potentially better option I was giving up, but if "substantial increase" was substantial, I'm in. (Luckily, I have available and am getting treatment with a much better chance of a cure that is not toxic.) Of course, I'm in the biz and I understand statistics so my view is not typical. But--if patients are really valuing "cure" as medically defined so highly, what are they thinking when they agree to palliative chemotherapy? (which is mostly not toxic so it's not apples to apples, but I think you get my drift).

If you are finding my train of thought a little hard to follow tonight, don't despair. Terry feels like I'm not quite thinking perfectly. It is actually really hard to hear that someone thinks you are not thinking well; how can you defend yourself? I felt that I had been thinking pretty normally; what other perceptions about myself/my thinking/the entire universe were suspect now? There were tears (a lot of tears), but after Terry told me he felt my reasoning and thoughts were ok, that I just didn't seem to have the usual level of vigilance/alertness and his faith in my ability to carry out automatic tasks was marred, I felt better. He always knows how to flatter a girl.

Tomorrow I am going to get labs. I am hoping this time that there will be something to fix in my labs that makes me feel more energetic and helps out my brain. For you, I hope a solution you have been seeking will start to appear. If you are not seeking a solution to some interesting problem, I hope you get to get busy soon because I think solution seeking is one of the funnest things we humans get to do.

Day 130 - coming right up! chemo

Today was a very nice day. Stefan stopped in this morning on his way to lecture and we chatted for a while. He became the second person in less than a week to ask to hear "my story." It's funny how these things work. I haven't told it in ages, then all of a sudden, twice in one week. Hopefully, I told the same story both times!

Later in the day, Tommie came to visit and we chatted, ate lunch and went for a 2 mile walk. This makes three days in a row. I did get quite short of breath on this walk too, but I bet when I'm not anemic, I'll be able to walk and talk at the same time.

I haven't brought you up to date on the best articles in the latest journals in a while so let me do that now. The Oct 24/31 JAMA had only one article I liked much. It was the "Piece of my mind" by an oncologist who had prostate cancer and who wrote about "Cancer Survivorship and Beyond." It is kind of interesting, I think until near the end when it really picks up steam and he writes "A cancer diagnosis is obviously unwelcome. There is no minimizing the sense of threat, and clearly one wants to survive. But by moving beyond the focused identity of cancer survivor, one opens oneself to fellowship with all in the grip of life's fragility." I thought that paragraph was really lovely and kind of captures what I don't like so much about "cancer survivor": it makes it seem like the life threatening experience of cancer is a special club that people who have other life threatening diseases or just the life threatening condition of being alive can't ever aspire to. Except he said it better. There were a bunch of articles, but none of them was really very interesting to me.

The Annals from 10/16, however, had lots of good stuff in it. There was a really cool study of reusing resterilized ICDs in India. It's not legal exactly, but a group of people collected them in the U.S. and sent them to India where people who in no way could otherwise get them, got these fabulous life saving devices and the devices went on saving lives. Very, very cool. Then there was this other study where they took a dozen normal people and had them sleep normally four nights, then did a fat biopsy, then had them sleep for 4.5 hours/night for four nights and did another fat biopsy. They were hugely more insulin resistant in the sleep deprived state. We've talked before about how closely linked I think sleep and weight/metabolism issues are. Another little piece of evidence.

I'm still reading "Dying for Beginners" and still recommend it and still having fun with "Beautiful Swimmers." I haven't posted pictures of my darkening hair recently so here are two, taken with my fabulous new phone. You can't tell the texture of my hair, but it seems to be about the same. the color is a little bit darker, actually less gray and less white. This is the opposite of what I was expecting, but just fine. I'm not entirely sure that the first picture looks like me.

It's really me, but doesn't quite look it to me.

This is me, too with a nice cytarabine/decadron apple cheek rash

Since tonight is chemo night for me, I'm hoping for a quiet, non-eventful, sleep-filled night. That's not a bad wish for you, unless you want a rowdy, busy, awake all night kind of night. In that case, I hope that's what you get.

Day 127 - a quiet pre-chemo day

Not much to report on for today: weaving, napping, 1.5 mile walk, dinner at Tommie's, another try at eating ice cream. I was hoping to get the weaving all set up so that when I came home from chemojail all I would have to do was sit down and start, but not quite there. I was successful at my nap. Terry and I went for a nice little walk which is always a highlight of the day. We wanted to have Green Bean for dinner, but figured out at 3:59 that they closed at 4:00 so not to be. We had Penang and Tokyo instead. They have this very plain chicken noodle soup (nabe yaki udon) which is one of my favorite things to eat in the world. It would be great comfort food during chemo, but I doubt it could be made neutropenic friendly due to all the vegetables so I had it today and I'll just have to remember it when I am having a bad day and wish I could eat it. We went to Stillwell's ice cream store which is my default ice cream store and I ordered my favorite, chocolate with peanut butter. It tasted almost normal which is the effect of five weeks off chemo and Dr. Hill will fix that tomorrow. but in December I will get six weeks and then seven weeks off chemo and I bet my taste buds will come back to normal just in time for Christmas cookies.

There have been a couple of good journals recently; let me point them out to you. The Oct 17 JAMA has a great article on smoking cessation which is a very important topic and I thought the article put it all together very nicely. There were also two interesting research articles. The first was examining trends in lipids in US adults over the years 1988 to 2010. The average cholesterol and all of the subfractions (LDL, non-HDL, HDL and triglycerides) have all improved for men, women, Mexican American, Non-Hispanic White and Non-Hispanic Black. The most telling table I think is the last one which charts LDL of people not on cholesterol lowering meds from 1988 to 2005 in each of the demographic slices I mentioned above. The biggest decline is in non-Hispanic white men from 132 to 119. The smallest is in Mexican American men from 127 to 123. When I started reading the article I thought about all the emphasis on lower fat higher carbohydrate diets that has happened since 1988 and expected that people's LDLs would be lower, but thought there would be an increase in triglycerides that more or less cancelled out the LDL lowering, but triglycerides seem to be lower too (I couldn't find a table that didn't include people on cholesterol lowering meds which has also gone up a lot since 1988). Really interesting stuff. Those kinds of differences, lowering a single persons' risk by 0.1% or whatever the improvement is, when applied to the millions and millions of Americans there are can make a big difference. Very cool. I have actually noticed an increase this year in how many people are riding their bikes and walking in downtown Exeter. I don't know if it's just a local phenomenon or if it's a trend, but I'm hopeful. The next step would be that they would put a bike lane in the road that goes to the middle school in town, but that might be too hopeful.

The second article that I thought was really interesting, not because I will do anything with the info, but just because wow! is a trial of chloride rich versus chloride poor IV solutions for volume resuscitation in the ICU in a single hospital in Australia. They found that chloride rich solutions lead to more kidney failure and dialysis. It may not have been the best done trial in the world as the average person only got 5 liters of fluid which doesn't seem that fluid down to me and there was no real mortality difference which you would sort of expect if you were going to have a big difference in the amount of dialysis you were doing. I have always wondered about how internists give normal saline (chloride rich) and surgeons give lactated ringer's (chloride poor) and how each specialty clings to their fluid as best. I have wondered if there really was a difference and now I have been informed--maybe.

This will be my last dispatch from home for a while. I'm off to Lebanon in the morning for more taste bud distorting, leukemia killing HIDAC. My hope for myself for tomorrow is that the HIDAC is highly effective. For you, I hope whatever enterprises you start tomorrow are highly effective, too.