Day 264 - say it isn't so!

There was awful news today in the SeaCoast. I literally pulled aside for the first responder fire truck on my drive this morning. I paid no attention at all to it, except to pull aside. If truth be told, when I saw the flashing lights in my mirror (which I did about a half a mile away) I was relieved it was a fire truck because I had not cleaned my car off very well and was momentarily worried I was getting a ticket for it. True confessions on the blog. Prior to this morning, that would have been a good haul for the police department, a ticket for a person who had snow streaming off their car. I am not sure when the last homicide in Exeter was. We've lived here eight years and I don't think there's been one that whole time. This is the kind of place where when you find a dog in your yard without a phone number on it and take it to the police station, a police officer comes into the foyer and picks up the dog to cuddle it.
In other news, I felt pretty good today, but then started feeling awful this evening. I have a pretty good cough so hopefully it's not pneumonia, but just post-URI annoyance.
I had a good day at work today. I had started a patient on two new pills yesterday and today was literally the best day she has had in several weeks, maybe months. She sent her husband out to buy her a coffee drink from Starbuck's when she hasn't eaten more than a bowl of broth in all that time. It's funny how excited we all were about her eating.
I was also thinking about how we hospice folks can almost walk into a room with a sick person and estimate fairly accurately how long they have left. I was imagining a science fiction story about a being who could do the same for all humans. Like, their time scale was so large and their brains so advanced compared to ours that they could see a person's life unfolded on the scale of decades after spending just a few minutes with them. Not exactly, like a fortune teller, but in a general sense, the same way that we can with sick patients. "People with this type of personality who have developed these situations tend to live for two decades and to die from accidents." It's a funny thought; maybe I'll give up the blogging gig and start writing science fiction instead.
Well, tomorrow is supposed to be snowy (again) so there really is no other wish that feels appropriate for us besides safe journeys.

Day 263 - Remedial civics class for the doctor

There continues to be lots of work to do. There is a bill approaching the NH Senate to simplify advanced directives in NH. Currently, as hopefully everyone knows from doing their own advanced directive, in NH you have to spell out your wishes on "life sustaining treatment" and "nutrition and hydration" separately. It's confusing and most people get the forms goofed up and fill them out exactly the opposite of what they really want. The bill which I think is in committee (I'm not 100% clear on how the NH legislature works--I've only lived here eight years and neither of my kids has taught me their civics lessons) would lump fluid and nutrition in with life sustaining treatment and have people just answer the question once, hopefully in a format where it makes sense. Currently, it allows you to say No, thanks to "life sustaining treatments," but to continue medically administered nutrition and hydration. There is a whole lot of verbiage before it that is tough to understand and people get tangled up in it and say that they want artificial fluids and nutrition when usually they don't. At least that has been my experience. In fact, I would go so far as to say that I don't think a single patient has filled the form out correctly to say what they mean it to without my assistance. Anyway, you can write to your state senator and encourage them to support the bill. You can use this to figure out who they might be. There was a public hearing earlier this week, but I am sure they would still welcome emails or letters.
I think I mentioned that one of my patients was assaulted and that I may be testifying. I met the (? one of the?) county's prosecutor today; I think so she could make sure I was semi-articulate and wouldn't say something bizarre. We met at the Hospice House and she very graciously accepted a tour. We dissected my four paragraph long clinic note and then she headed out. The next step if things continue will be a deposition where the defense attorney asks me lots of questions and there is either a stenographer or a recording device and I'm under oath and everything. It's being pretty interesting so far. This is my first experience with criminal court (knock on wood!) so it's all new and has the sheen of CSI to me.

Terry is learning to make sushi-style vegetable rolls. The red stuff that looks sort of like salmon is radish and, not only is it beautiful, it has a nice crunch and a little bit spicy flavor that contrasts nicely with the avocado. We had actual salmon for dinner so I have not yet turned into one of those bloggers who posts pictures of every meal. Is it really supposed to be better that I am a blogger who posts pictures of my husband's lunch for tomorrow?
I am hoping for good travelling for tomorrow for us all. And, maybe a tiny wish for an early spring?

Day 262 - babies, my tween and insurance, all separately

Hey! Guess what? My disability is goofed up! I really don't understand how, but now I have to spend a bunch of time on the phone trying to sort it out. I am really much more interested in sorting out why Mrs. X has pain, Mr. Y has confusion and how to help the Z family sort out what their mother would like, but it doesn't really matter. Even though I'm almost off disability, if I need to go back on and this episode was closed improperly, then it might be harder/not possible. Maybe. Maybe not. I don't know or understand, but the disability person says that. Since I am now in the uncertain world of having once had cancer and caring very much that my disability not get messed up for the future just in case, I have the exciting opportunity to learn all about the Dartmouth Disability Program as administered by Hartford. I would rather be learning about treatment of psychiatric illness in the elderly, but it doesn't really matter what my interests are right now; I'm learning about disability insurance. Just complaining as I pass through, don't mind me.
My cold is almost better. I was able to work today and felt except for the constant nose blowing and sniffing like I was back to normal. Well, and the occasional coughing fit. I am hoping that having a cold that took two months to go away followed immediately by a new cold that sent me to my couch is not the new post-leukemia normal, but simply an aberration because I happened to be in the wrong place at the wrong time, microbiologically speaking.
It was great to be back at work, although it was a bit of a hairy day, made more hairy by the fact that I helped out in Ellie's class this morning. Certainly, hairier and more fun. She wants to know afterwards exactly who I had in my group for each class. "Josh? Josh Smith or Josh Jones? Did he have brown hair or blond?" Also, "Did you notice the girl in my class with the red hair and the purple T-shirt? The one who was sitting two rows behind me and towards the window?" It's lots of fun to get a little peep hole into her world. I remember the days when I would know everything she was thinking because I had seen the raw material go into her head, but now, I have so much less visibility into it.
Also about kids, I had a lovely experience today of being stopping by the elevators and chatting with a patient's family when down the other side of the hall comes a man and woman carrying a newborn baby, obviously going home for the first time after the baby's birth. The family I was with and I cooed over the gorgeous baby and then I left, re-invigorated and amazed. I have noted many times before how much comfort families who are losing a loved one seem to feel from the presence of newborns in the same hospital even. Our society tries to pretend that birth and death have nothing to do with each other, but I think people understand instinctively that they do. Or maybe it's just that everyone loves a newborn, but I think it's more than that. Back when I was a regular hospitalist, my patients did not seem to have the same level of connection to newborns that they do now.
For me, for tomorrow, I am hoping for my loom part. For you, for tomorrow, I am hoping for whatever you are needing to arrive from afar.

Day 261 - and lingers

Not much else to say. The virus lingers and lingers. I still sound like I should have quit smoking decades ago (except I never smoked) and feel like I have a fever (except I don't). I ventured out to get soup for lunch and to take Ellie to her first (!) voice lesson. I thought I would waste some time at the Durham MarketPlace while she had her lesson (her teacher is in Durham) and as I parked my car, I realized that I was feeling strongly anxious. I couldn't figure it out for a while, but then of course! college town, independent grocery store, next stop is 1West for a week of chemo. I guess I may have some not entirely resolved feelings about that experience. I was maybe primed for an emotional experience because it was Ellie's first lesson and I hadn't seen the teacher in two years since Emily went to college and I had some strong, proud kind of mom feelings about Emily singing so the whole thing just came together in the parking lot of the grocery store. These things, once identified, usually just wander away til the next time they ambush me so I was able to buy my salmon and pasta without them trailing me.

For tomorrow, I am going to hope for myself that enough of this stupid virus is gone that I can return to work. I don't think I'm asking for too much, universe! Show some compassion, please! For you, for tomorrow, I am going to hope you have a virus free day.

Day 260 - the virus lingers

I have been pretty sick now with a virus since Thursday mid-day. I still feel lousy and am spending most of my time on the couch. Rather than tell you about my febrile dreams, I'll tell you a funny story about my early adulthood. It's much more interesting.
Back in 1986, I lived in Ann Arbor and was working at an image processing company, doing computer programming. I was in grad school, getting a master's in computer science. One of my friends worked at Borders, back when there was just one Borders in the whole world in downtown Ann Arbor. It was such a good bookstore; once I walked in and said that I was looking for a trio of books written by a Swedish woman at the turn of the century. I think she won a Nobel prize for them. The person who was helping me said, "O, you mean the Kristin Lavrandottir books. The author was Norwegian and I think we have two of the trilogy." At that point, if you wanted to work at Border's there was a pre-employment quiz where they made sure that your general knowledge was good enough and that there was a specific area or two that you had a deep knowledge. I was having one of the crises that often arise when one is in one's early twenties and was considering bagging the whole computer science, nine to five job thing. My friend offered me a job at Border's; I think I could have passed the test. That was just before Border's went through a period of explosive growth. I suspect if I had taken the job before long I would have been managing several stores or have been the regional head of technology or something. I would have had a stock option and that was probably my chance to become wealthy. I missed it. Why? Because I decided to do the safe, reliable, responsible thing. I'm not sure what the moral, if any, is, but the irony is outstanding.
Here, completely unrelatedly, is a depression simulator called "Depression Quest." If you've ever wondered what depression might be like, give it a try. If you are depressed right now, give it a miss. It makes me think of those games we used to play on computers in the 1980's where there are no real graphics and a lot of words and atmosphere. As you go through the game and get more or less depressed depending on your choices, the options available to you either expand or narrow as you have less and less energy. 
For me, I am going to continue to hope fervently for an end to this virus. For you, I am going to hope you never get this one.

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.

Day 258 - virus, drat and doing OK

It's not the best day to me. First off, I couldn't go to work because I had a fever last night and I thought it best to keep the bugs to myself. You're dying? You'd like to die with a runny nose and fever, right? So, I stayed home and surfed, napped, spent a little time working on a template for clinic notes and broke my loom. I waited to break it until the weaving shops were closed so I'm not sure if I can even find out about a replacement part until Monday. Arg! I was about one inch short of being finished with the "windows" piece. Drat!



See that harness that is drooping? It is supposed to be up like the one behind it. See that piece of frayed white cord? It is supposed to be intact and taut like the other one you can see in the pedal next to the broken one. See, you're ready to be a loom repair person; it's easy, but sadly there's not much money in it.




The windows piece. All that is left is an inch or two of black border at the top. I suppose I could continue weaving and hold the #7 harness up whenever it was supposed to be lifted. Hmmm.
Having a fever last night made me think of when I was pregnant with Emily (no, really, stay with me). Every time I would do something for the first time since being pregnant, I would note it. "This is the first time I've been here, bought clothes, swam in the ocean, fill in the blank since being pregnant." Now, that I am done with the leukemia, I think things like "this is the first fever I've had since being done with the leukemia." I had thought that I would totally freak out with my first fever because the whole fever thing had been so terrible when I was in treatment, but it turns out I did OK. I had thought I might also freak out because I am sure that the virus I had back in March was what transformed my previously normal marrow into leukemic marrow and yikes! this is another virus. It turns out I am made from sterner stuff than that and handled both "firsts" with aplomb or at least without panic. I am feeling relatively back to normal now and am so glad I managed to find the three day window when my labs would be normal!
For me, for tomorrow, I will wish that my garbage immune system gets going and gets rid of this virus quickly. For you, for tomorrow, I will wish that you do not get exposed to this little charmer.