Thursday, February 28, 2013

Day 257 - bleh

Well, evidently my immune system has decided to celebrate the end of the leukemia by getting a virus. I feel lousy, have a slight elevation in temperature and am taking to my bed. I am sure that my labs are goofed up again and probably will be for several more weeks, but I do not have to check them again until April. Thankfully, I got them done during the few day hiatus between the Christmas virus and the Spring virus.
Wishing you the ability to avoid this virus and me a good night's sleep.

P.S. I have my port removal appointment.

Wednesday, February 27, 2013

Day 256 - lots of work

Not much to say about today. There was a fair amount of work to do and I did a fair amount of work. I think I am just about ready to be re-abled (undisabled?) which is pretty exciting. I think I mentioned a long time ago that I examined a patient after an assault and the state is prosecuting the person who assaulted the patient so I may be testifying. I spoke with the lawyer today. She wants to meet me to talk about what I might say if I testify and probably to make sure that I am semi-articulate and seem sincere. I, shameless promoter of good end of life care, suggested we meet at the Hospice House. She'd never been to the Hospice House and I figure at some point she may have need of hospice services and having seen the CHH and how nice it is can only help her and her loved ones when they need to think about their end of life issues.

Debbie came to visit today. She had never been to the Hospice House. I love giving tours because it is such a beautiful and peaceful place and I truly feel that if there are magnetic fault lines in the earth, where psychic energy of some sort builds up in a beneficial way, that the Hospice House is built on one. Anyway, it was nice to see Debbie and she seemed to be suitably favorably impressed by the house.

In other news, not much else going on. I haven't scheduled my port removal yet. Partly because I was actually kind of busy today and partly because--I'm sure of this--ports protect against recurrence of cancer. I'll get right on that research: randomized (can't be blinded) trial of port removal or retainment as a means of secondary prevention in cancer.

In lieu of a real post today because my life has become so normal and dull that I am reduced to talking about pasta recipes and paint drying, I thought I would post my PCORI essay. It is *exactly* 500 words which is their limit. How 'bout that, huh? /*start */

When I was diagnosed with leukemia two years after passing my board exams in hospice and palliative medicine, the irony did not escape me.  Neither did the fear, fatigue, nausea or inconvenience. Despite my years of experience as a physician, I was just a regular patient. Prior to my diagnosis, I had some idea of what it is like to be ill from talking with my patients, reading the literature and reflecting on what I saw in my patients every day. After my initial 29-day long hospitalization, I realized that I had had some parts right, but I now understand why a febrile patient might refuse a chest xray. If you are already cold because of a fever, every part of the journey in a wheelchair with a bald head to a room at the ideal temperature for the machines where you have to take off everything but your johnny and stand with your arms up against some cold metal feels like a hardship. I better understand why patients might be “non-compliant.”

The perspectives and experience I have had as community PCP, hospitalist, palliative care physician and patient fuel my interest in applying to participate in PCORI. I know what physicians think it is like to be a patient, and I know some of the gaps in this knowledge, both intellectually and experientially. I think that having both the physician and patient experience enhances my understanding of both of the experiences.

To give a specific example, when one is undergoing chemotherapy for leukemia, one of the side effects is destruction of the immune system. It makes sense to be sure that the food one eats has no chance of carrying bacteria or fungus. The rationale is that bacteria or fungus particles which would normally be innocuous could, without an immune system to keep them in check, cause serious infections. Operating on this very common sense idea, people are placed on a restrictive diet when they are getting chemo. The “neutropenic diet” avoids  buffet table food, unpeeled fruit, aged cheese, wine and many other things. My inner physician agrees that skipping these is a small price to pay to avoid an infection. The patient in me says that when I feel lonely and scared, I want a grilled brie sandwich with a glass of wine and I couldn't have this for most of six months.

The evidence base for the eating plan in question is slim because the ability of cancer patients to eat what they want is not a priority for the people who have been making decisions about where we put our research energy. I understand why it has not been a priority. But a patient perspective now informs my thinking.

I think as a physician, in particular a palliative care physician, with a recent personal leukemia experience, I have a unique perspective to bring to PCORI. I would like to contribute to the shape of research in the future and hope I am chosen to help. /* end */

They'll want me, right? I'll find out in mid-March and you will find out one microsecond later.

For me for tomorrow, I am wishing for normalcy again and safe travels. For you, normalcy if that sounds good to you and safe travels as well.

Tuesday, February 26, 2013

Day 255 - got my wish

It's school vacation week for Ellie and I didn't work today so she decided that she was going to teach me to play Minecraft. For those of you without tween/teens in your life, Minecraft is an app ("It's not a computer game, Mom!") that lets you build anything you want. You are a little avatar who runs around with a block of different kinds of material and builds things. There are two modes: creative and survival. In creative mode, you're immortal and your resources are unbounded and you can make and build things. In survival mode, there are zombies and creepers and enderman and you only have the resources you mine yourself. It can be played cooperatively. Ellie likes to play in creative mode and she showed me a scenario she had set up that had a story that went with it. She literally talked for one hour and thirty minutes (maybe more) telling me the story about the people who lived on the island and showing me the apartment building and who lived in each room and how much rent they paid and the school and the dorm and this is where Belle who is the maid lives and she follows the kids out to a play and she doesn't know what a play is and it's "Beauty and the Beast" so she hears her name being called and thinks that people are chasing her so she runs here and here and then ends up in the underground hideout for the natural tribe and etc. Wow! Highly recommended. I can see how it would be fun. You can build these really cool three dimensional things and a lot of the different kinds of bricks float so you can build a structure and get yourself stuck in it pretty easily and not see the little window you can escape through way over there around that corner.
Next I had lunch with Tommie and happened to run into Patrick so that was a nice surprise for all of us. I had a tofu reuben which is one of my favorite things to eat and then chocolate beet cake. I wasn't sure the beets added anything except beautiful red color to the frosting, but it was tasty.
My final adventure of the day was a trip to the dermatologist. My thought is that while my immune system was being pounded by chemo, my latent pre-cancerous skin things all had a vacation and bloomed. I have had these little dark spots on my cheeks for a few years now, but one of them recently has gotten rough and red around the edges. The derm agrees that it looks like a pre-skin cancer and gave me a blast of liquid nitrogen. Ouch! Hopefully it will grow back nice pink smooth skin.
Attractive, isn't it?
It's kind of nice to have a normal day. I still need to get my port removed (I didn't want to do it while my labs were still abnormal in case I needed it again). After getting my port removed, I think I will be done with my leukemia related doctor things except for labs every three months for a while. I am turning more and more into a normal person. Pretty soon I will stop having nightmares about foot long tomato caterpillars and then I won't know what to do with myself.
For tomorrow, I will wish for nothing special, just a normal day. For you, if you would like an out of the ordinary day, I hope you get it, otherwise, I would love to share my normal day.

Monday, February 25, 2013

the results are in

OK, so I'm a bad person. Dartmouth doesn't feel it's a violation for employees to look in their own charts, but I rarely do except through the official myDH website. Lots of other employers do feel that no one can look at their own chart, but not Dartmouth, thankfully. (In case you are wondering, they do feel it's a violation if I look in anyone else's chart who is not my patient.) I don't usually look in my chart because I think it's not very good form, but I made an exception tonight because I was very anxious, it's too late for anyone to call now and, as I've already mentioned, I'm a bad person. Anyway, the labs were normal. Like, totally normal. Dr. Hill has not called me with the official reading, but I did get my labs a day earlier than he was expecting because I was such a nervous wreck this time. There is always the slim possibility that he will tell me that I missed something, but it's not rocket science to look at a CBC with a long column of black numbers and call it normal. Especially since they make the abnormals red.
You may not remember the context of this set of labs, so let me tell the whole story. It goes back to January, when I had my second opinion visit with Dr. Stone. I then went back to Dr. Hill and we went over those results and the CT results and declared me done with treatment. But, wait! Just a minute. What do we have here? Abnormal labs? You can be "done with treatment," but cannot really close the book on "My Leukemia Treatment" because you still have abnormal labs. It took them this long to normalize, but finally. Finally. They are normal in every way. I can finally feel like I am done with my leukemia treatment. I think I will sleep well tonight.
I did not mention another milestone that happened today because it was swamped in the overall emotional content of the day. I did mention it to the people who were around at lunchtime, however. Today, for lunch I ate the thawed last remains of the last food that anyone cooked for me when I was in and out of the hospital this summer. It was delicious.
If I had known that all it took for my labs to normalize was to clean out the freezer, I would have done that months ago.

Day 254 - I cannot even think of a title

Sometimes I feel I my life is written by some B-listed Hollywood script writer. It often feels like an overly dramatic, coincidence ridden narrative that would be good if it wasn't so packed with gratuitous coincidences and unrealistic drama. Today after getting to deliver good news to a palliative care patient at home, I thought I'd get my labs done early. You know, cut a day off the whole waiting for labs torture thing. I wanted them to add on some labs so I had to have a conversation with the lab tech and for some reason I don't recall and absolutely cannot recreate, he mentioned that his wife had died from breast cancer recently. Gosh, I'm a hospice doctor, she died in hospice, blah blah. He has a daughter the same age as my daughter. Gosh, my mom died from breast cancer when I was seven. Talk about his daughter, talk about my experiences a little bit. O, yes, you're here to have your blood drawn. We're drawing a CBC today. Yes, we're doing that because I had leukemia this summer. By this point, the two of us are feeling something--what is going on here? how did I get to be in the cubicle with this person who has the other side of a bunch of experiences I've had? How is the world set up to have drawn me and him together here today? There are times when you almost feel the brush of the timeless on your cheeks as it leaves the room, "My work here is done. Carry on, humans." We talked for a long while and I must say I've never had a blood draw be an emotional experience before.
Rereading the paragraph above, I see I said that he and I were drawn into the same place. I suddenly imagined a huge metaphysical syringe with the two of us drawn up into it together. Put in the metaphysical lab processing equipment to see what happens if we take a person with this life story and add a reagent. Which of us is the reagent and which the substrate? Or perhaps that is a false dichotomy.
At any rate, I am sitting here at the kitchen table, thinking about the emotional content of my day, waiting for Dr. Hill to call and give me the scoop on my platelets and white cells and hoping you have had a good Monday. I think yesterday I was hoping for distraction from my impending labs. I think I got my wish in trump suit.

Here is the best of the photos I took while driving this morning. I love the colors. A few miles further, the color scheme was pastel, but I didn't pull my phone out. I love the sun only on the tips of the trees on the left. What a beautiful state we live in.
For me, for tomorrow, I am going to hope for a totally normal day, one without any worries about blood elements. For you, I hope you can have a worry set aside.

Sunday, February 24, 2013

call me, me on call, calling off the assumptions

I was not on call today, but it was just about as much fun anyway. The phones at Home Health and Hospice broke and we didn't know this. A hospice patient at home was having a tough time and couldn't get through. Her family called her oncologist who fortunately had my home phone number and called me to find out what was going on. I called the hospice house where they have all the back lines and home phones to everyone and we were able to get the patient squared away pretty easily. The next problem was figuring out how to find the person who could get the phones back in order. It was very funny because I called my boss: no answer, her boss: no answer; the only other administrator whose name I could remember: hallelujah! she was home and knew the right person to call, but didn't have her phone number. Call back the hospice house. What was funny about this all was that all this time I was thinking to myself that hospitals have administrators on call; I should mention to HHHC that we should have such a call schedule. Of course, there *was* one yet somehow once I started down the road of *I* must find the person to help me, rather than this was a solved problem, it just never occurred to me. In my defense, it also never occurred to the nurse who helped me out at the hospice house. It turned out to be a reminder when problems get tough to check your assumptions, to go back a level and make sure you've got that all straight. Also, a fire drill for what to do when these sorts of things go wrong. The oncall nurse was going to call all of our home hospice patients and make sure they were OK, i.e., that a call hadn't gotten lost at any point so I think it all turned out alright.

The other activity for today was to get cracking on the weaving that I've been leading up to for a long time now. This is the kind of thing you can do with double weave and the kind of project that made me want to learn it in the first place. Pretty cool, huh?

Tomorrow is a hospice house day, followed by a home visit. If the smelling like cigarettes problem could be fixed, it would be hard to keep me from doing more home visits, they are that much fun. As it is, having to put my clothes in the washer and take a shower before I can have a snack or chat with Ellie or even play with the dog is kind of a drag. I really hate tobacco.

For me, for tomorrow, I will hope for lots of fun and interesting things to keep me distracted from labs on Tuesday. For you, I hope for the level of distraction you need to concentrate optimally on your life. I could imagine it being more or less than the current amount.

Saturday, February 23, 2013

Day 252 - potatoes

I learned several things today, all in one way or another, related to potatoes. On weekends, I often like to make a NYT recipe and this week, despite the fact that I thought I didn't really like them, I decided to make gnocchi. I have had them a few times before and always felt that they were a bit like eating small gluey bricks without a lot of taste. The pictures in the NYT were so appealing and lots of people whose taste I trust like them, so I thought why not? It's only an afternoon and a bunch of potatoes that I've wasted if I hate them. It turns out that if you make the recipe in the NYT exactly, I like gnocchi. A lot. They taste like potatoes; they're not gluey and while they were not "light as a cloud," they were not heavy. Having been raised by people who lived through The Depression, I very carefully searched for a recipe for the potato skins before I started the whole enterprise. Pioneer Woman has a nice potato skin recipe and they're good without the filling, too.

After the first batch was out and I tried a couple and decided that they were edible enough to eat for dinner, I realized that I had been so enchanted by making noodles, that I forgot the rest. Noodles--even really delicious noodles--without sauce is not a very appetizing dinner. Terry has a dairy allergy; Tommie has a tomato allergy so I felt like a kitchen impressaria, whipping together tomato sauce with olives and capers on one burner, improvising mushrooms in white sauce on another burner and boiling 12 homemade delicious gnocchi at a time on the third burner (they clump if you cook too many at a time and also when you put them in, they lower the temperature of the water and then they don't cook as nicely). If the whole doctor gig doesn't work out, maybe I have a future as a gnocchi chef.

The one thing the NYT recipe doesn't tell you is how hard it is to rice potatoes. It turns out for me that there are a couple of extra steps involved. First, you have to google "ricer" to find out what one is. It turns out to be a kind of extrusion device, like we used for play-doh when we were little. Then, you have to drive to Portsmouth to buy one. I was out of chocolate so I really had to go to Portsmouth anyway. Then you bake your potatoes, do the goofing around to make potato skins and finally, stuff the ricer full of potato flesh and press. Because I had no idea what I was doing, I used the little holed disk first. I swapped that out fast! Ricing is such hard work that I literally worked up a sweat. If you think I am one of those people who uses literally when they mean figuratively, come see the long sleeved shirt I had to trade for a T shirt! After the ricing, it continues to resemble play-doh in that you mix the potatoes and flour with your hands and it gets kind of crumbly and then you add a little more flour and the whole thing suddenly sticks together. You roll out a long snake and cut it up and boil it. Not appropriate for low carb diets.

Partially frozen and waiting for lunch next week. I wish I had taken a picture when it was warm, on a plate and photogenic.

For tomorrow, I will hope for safe travels for all of us.

Friday, February 22, 2013

Day 251 - survivor guilt, the internet

Not much to report on today. I had an interesting conversation with one of my doctor friends about survivor guilt and a mutual doctor friend who died a few years ago from pancreatic cancer. I felt somewhat guilty back when I was completely healthy and he was dying, but I feel more guilty now that I have a cancer that has responded well to treatment and he has died. I think the more like you the person is, the more acutely you feel the survivor guilt. This is probably not an original observation, but it is new to me.
A related phenomenon is that sometimes when I hear a patient's story, I think, "Holy buckets! What fabulous problems I have! I'm so glad I have my cute little problems and not some one else's huge difficult problems." I know this is a pretty universal reaction for a lot of us.
I don't think I've had survivor's guilt with a patient although I have had "I love my problems" with fellow doctors. I wonder if health care providers feel survivor's guilt with patients or if the way we separate ourselves from our patients keeps us from that. And what about when the patient we're separated from is, themself, a doctor? I have only taken care of one doctor patient who had something really bad happen to him medically, but it was a disease I cannot get so the opportunity to relate closely myself was not really there. I do not have survivor guilt feelings about him.
In other musings, I have been wondering about the differences between opioids recently. It is fairly common for people to have a different side effect to beneficial effect ratio for different opioids. It seems, however, that dilaudid and demerol are the two opioids that people with a preference generally feel work best. I wonder if my anecdotal observation is true or not and I really wonder why this might be. Dialudid and morphine are both primarily mu agonists. Perhaps dilaudid is more avid to mu2 receptor subtypes which wikipedia tells me mediates euphoria. Or perhaps not.
Although I lived half of my life without wikipedia and the internet, I cannot remember what it was like to lack them. Remember when we had to go to the library to look stuff up? Remember when you had to call up your cousin who was good with trivia if you wondered what the capitol of Nairobi was? The Berkeley public library used to offer a service where you could call a reference librarian up and they would look things up for you so you could find out whether or not Jordan and Egypt share a border without having to leave your house. I had never heard of any other town that offered that service and I'm sure none offer it now.
In completely unrelated news, no nightmares last night. Phew.
For me, for tomorrow, I will hope for a continued absence of anxiety dreams. For you, an interesting question and the means to answer it.

Thursday, February 21, 2013

Day 250 - bad dreams

Today had a sad event which was fun at the time but represents the last time all five of us Home, Health and Hospice providers will spend an hour of time together. Meg is retiring next month and then there will be four. I have known Meg since I've been in New Hampshire as we both used to practice in Exeter, too. It will be sad to be without her, but she will be retiring and having lots of fun travelling around.
Remember how I used to have all those anxiety dreams? I remember it used to be like days 14 to 21 or something of every cycle. I haven't had any in ages, but I guess my brain kind of missed them so last night I caught up by having five. I don't remember the details of the first few, one involved a train coming at me with a huge bright light. The last two involved a person with a gun. Dream #4 involved a person with a gun who couldn't figure out how to shoot around the corner and so I was able to escape them by going down a side corridor. I tried to call 911 for help, but when I did all that I got was put on hold while a "This American Life" about the Chicago 911 line played. Dream #5 involved a person who walked around the corner and into the corridor I was in. I was able to escape them by waking up, but it took forever to fall asleep again and I was not all that happy when the alarm went off this morning. I can't really think of anything I did to set them off, hopefully they won't return again tonight. I don't have another set of labs until next week. If the dreams come every night until I get my labs, I'll be begging Dr. Hill to do labs early.
Tomorrow should be just a regular work day. For myself, I will hope for a night without bad dreams or the insight to figure out why I'm having them. For you, I will hope for a little bit of release from any anxiety you have. If you don't have anxiety, I will hope for you the wisdom to see how fortunate you are.

Wednesday, February 20, 2013

Day 249 - navel gazing and self-improvement

In yet another twist of February, Emily may not be able to come home this weekend because of the forecasted snow. I was, of course, really looking forward to seeing her. WMUR seems much more bent out of shape about the storm than weatherunderground or NOAA so hopefully it's just an attempt to sell advertising time. I want to see my daughter! and I don't want any stupid snowstorm standing in my way!
These days I'm working about 24-28 hours / week and it's going pretty well. I'm still tired often at the end of the day, but not every day and I can't figure out why a particular day makes me more tired than another. It doesn't seem to be intensity or amount of work or patient contact versus admin stuff. I'm just not sure, but some days (yesterday) I am really tired and some days (today) I am not. Now that I'm working more, I'm having a harder time getting myself to go to bed on time. I think it's because I have less time for myself and it makes it hard for me to stop doing something fun (usually goofing around on the internet) and go to bed and then--here's a surprise! sometimes I haven't had enough sleep when the alarm clock goes off. This was a problem I identified last week and I've been getting myself more disciplined recently, but I'm so used to having a lot of time that I feel deprived at bedtime now that I am getting less.
I remember when I was first home from the hospital thinking of all the things I could do, for instance, driving to Portland to visit my friend Jodee. This was in July/August after induction when I was home for a month after spending a month in Lebanon. I remember thinking that I would go to Portland later in the course of chemo after it had killed off more of the cancer because then I'd be feeling better. I realized fairly quickly that that was not a very realistic way to think about it because actually I didn't have any symptoms so I was really only going to feel worse as the chemo went on. I've wished that since I had "all that time off," I could have done something useful with it: restarted playing viola, improved my Spanish, whatever, but it was a vain hope because when I was recovering from chemo, I was actually doing a lot of recovering and recuperating which is, it turns out, mutually exclusive from practicing viola a lot or studying Spanish intensively. Drat! It is a good thing that I understand so thoroughly intellectually that I could not embark on a self-improvement plan while I was recovering from chemo because otherwise I would be berating myself for not having made better use of the time. I remember thinking pretty hard about this at the time that I was recovering because I knew it would be an issue for me down the road. Fortunately, in the 48 years that I have lived with my mind I have learned a little about it and can predict some of its idiosyncrasies so that I can protect myself from, well, my judgmental self.
OK, self-congratulatory self, can you develop a self-improvement plan to make you a little kinder and gentler towards yourself? Or is this all too much navel gazing? The thing is, of course, different people respond differently to being sick for six months--both at the time and in retrospect. Not everyone would view leukemia as a missed opportunity for self-improvement, but you better believe that the nuns who taught me third through eighth grade would have. Sorry, Sister Bernadette, but I think I did OK.
For me, for tomorrow, I hope for the wisdom to be a little gentler on myself. For you, for tomorrow, I hope for the wisdom to see your own self relationship and to make positive adjustments.

Tuesday, February 19, 2013

Day 248 - work and blog

Today I have a couple of observations to make. One is that as I get better the blog gets less interesting. That is not only my opinion, but also the opinion of my faithful readers who are numbering smaller numbers which is OK. It is becoming less interesting, but less interesting is more normal and I'm OK with that. I am having the experience of having to tell people in real life anecdotes that I have put on the blog because they have not read the blog more and more. It's a little surreal to start to tell someone a story and to have them say "I read it already" or for them not to say it, but their facial expression indicates that they know what's coming. I took early on to starting stories that I had told in the blog with "do you read the blog? I was just thinking of blah blah" because most of the people I spoke with did read the blog. Now, it's reversed (both because fewer people read it and my world is bigger) and I don't routinely say that. It's an OK change.

The other observation is that I really miss primary care. I saw one of our palliative care in the home patients today because Eva, the nurse practitioner who runs the program, felt like she had run out of ideas for this patient. The patient has a whole bunch of interacting big ticket medical problems and it's not clear which ones are causing which symptoms and how, to say nothing of in what manner we might treat said symptoms. I felt like I really get to dig my teeth into some medicine in a way that I don't get to as much in hospice. Yum, yum! I am feeling very impatient for the outpatient palliative care clinic to start going. People who know me really well might have already started a pool about how long I stay away from primary care.

The bad thing about visiting patients at home is that if they smoke, you stink afterwards. I didn't think ahead of time and wore my really nice Patagonia jacket that I totally love into the house and when I came home, I hung it out on the clothesline to air before I did anything else. Later this evening, when it started gently raining, I didn't hear it until the jacket was so wet that it had collected a little pond inside the hood. The bright side is now I know exactly how rain resistant it really is and it no longer smells.

I haven't mentioned it, but Maggie has been off her food again. As a lab, she loves nothing more than eating so when she is hesitant to approach her dinner bowl or to accept the empty yogurt container, one knows something is up. I thought I could just call the vet and they would see her because she was sick (I don't know why I thought that; I couldn't always see my human patients when they were sick), but it turned out we had to wait two days. She's better, but not all the way. Her appointment is tomorrow morning so I'll guess we'll find out what her deal is. I'm betting on picked up from eating  gross debris in the woods and will be given flagyl.

For me, for tomorrow, I'm hoping for a serious attack of genius regarding today's patient. For you, I will hope for movement on a puzzling situation you would like to improve.

Monday, February 18, 2013

Day 247 - February is the least fun month

In case you are wondering, I am officially over February. About three years ago, it seemed everyone was so grumpy all February that I vowed to go on vacation for the whole month the next year. It didn't happen. I usually feel a low level of undefined restlessness in February--perhaps a cousin of cabin fever; I just can't get settled and comfortable. I start projects; I am filled with shapeless longing for something undefined. If I ran the world, New Year's would be February 14 and everyone would get a week off. Doesn't that sound good?

Otherwise today I worked, I walked, I bought new earrings and reading glasses.
Old earrings, new reading glasses, same me.
One of the nurses asked me where in my disease treatment I am and it's funny that there's not a whole lot to say, "In remission and hopefully will stay there." It's hard to figure out if I should launch into the whole repeat lab business or not. I didn't feel like talking about it; I'm maybe a little tired of the whole leukemia thing; so I gave the headlines only.

For me for tomorrow I will hope for whatever the self created emotional equivalent of a low dose of haldol might be to settle down my restlessness. For you, for tomorrow, I will wish for more or less restlessness, as you wish.

Sunday, February 17, 2013

Day 246 - a contrary day

The theme for today is evidently little disappointments. I was supposed to go to brunch today with Tommie, but the snowstorm made her reluctant to drive far (probably a wise decision, just one I don't like). I had to sop my sadness by going to the Green Bean with Ellie and one of her friends.

As all grilling fans know, vegetables grilled during a snowstorm are particularly tasty and I just happened to have red and yellow beets, potatoes, parsnips and mushrooms. After I started up the grill and arranged them on the tray, I discovered the only thing lacking was more than five minutes of propane. We certainly weren't going out in this weather to fill the propane tank so--to the oven. Very inferior solution. Of course, if I'd set my mind on oven roasted vegetables from the beginning, I would have been very happy with them. As it is, I'll probably make them like this again and then if the power fails and I have to grill them, I'll complain about that! I never really noticed before, but cooked beet flesh is translucent when cut thinly. Exquisite.

I did a little weaving--work on setting up the warp. With how many things have gone in unexpected directions today, I'm not sure I should be touching it. One of the many good things about weaving however, is there is very little of it that is not undoable. If one is using a hammer to make a metal vessel, one can never take back a hammer blow. If the metal cracks or the dab of paint ends up in the wrong place, too bad. With weaving, it may be a lot of work, but you can unweave almost anything without harming the materials so I shouldn't worry too much. If something goes wrong, most likely it's just time that will be needed to fix it. Ha!

Tomorrow,  I have nothing out of the ordinary planned. I'll hope for an anti-contrarian day for all of us.

Saturday, February 16, 2013

Day 245 - more usual than usual

Aside from schlepping Ellie or myself to or from Music Man Jr performance, cast party and cast party shopping, I did very little during the day today. It's astonishing how much effort these things take and if one is driving some place at 12, 1, 2:30 and 4, it is difficult to do much else in the day. Early on Terry and I went to Kittery and had breakfast from the Beach Pea in his studio. This haiku presented itself to me while I was there.
Watching the snow fall
A curtain of live bamboo
What a world I see.

Here are the pictures of my last project which I took off the loom a while ago. They do not seem as ugly to me off the loom as they did on, somehow, although I'm still not in love with them.
The last one I made. I like the difference between the last two checkerboard rows and the two before them. The left side is checkerboard, too, but won't show up except under bright light.
This one seems a little psychodelic to me. Most people like this one the least.

This one looks kind of cool off the loom, but I notice that the two sides have wildly different fringe lengths.
I did manage to start warping the next project a little bit and to have dinner with our friends Patrick and Mary Beth which was delightful. We went to the Blue Moon where they had never been before and had a delicious dinner and great conversation.  I feel like Patrick and Mary Beth like to eat as much as I do and that makes it a lot of fun to eat with them because not everyone finds food as interesting as I do.
For me, for tomorrow, I am hoping for safety from the winter storm and will hope for that for you as well.

Friday, February 15, 2013

Day 244 - the results are in.

I bet you're interested to find out how my experiment in being happy everyone I speak with is alive went. It turns out to be too exhausting to communicate that level of thrill to everyone. I was able to think to myself about half the time in the morning, "Hey, look! [insert name] is here! Isn't it wonderful to see them?" and it was nice to think about that, but to communicate it to the person? I'm not sure I could do that and still have enough energy left to do, say, my job. By the afternoon, I was too desperate to be done working for the week to be able to bring the mental energy required. I think I will run the experiment for the rest of the week and see how it feels after I've been doing it awhile. Does it get easier? What will happen the first time I remind myself how happy I am to see someone I'm not happy to see (doesn't happy often, but from time to time)? Will anyone I interact with notice a difference? What about the people I interact with in real life who read this--will they notice or will it just make things weird? Enquiring minds can't wait to find out. I'll keep you posted.

Otherwise, today was a very pleasant day for me. (On a This American Life segment recently someone described a toddler's life as being essentially a long string of good days, each one pretty much like the others. Sometimes I wonder how much different my life is from a toddler's life as it is usually pleasant and most days go kinda similarly.) Home, House, hospital, home. Delivery pizza for dinner but tonight is a red-letter night because it's Music Man, Jr., the world premiere. Tomorrow is a matinee performance and then it's all done. All that work for two magic performances at school and two in public.

I do not have a segue into the cute picture that I found and want to share, but here it is:
Perhaps I should become a dog blogger?
Tomorrow, I am hoping for a successful finish to Music Man, Junior for Ellie. For all of us, I will wish for satisfaction from our activities.

Thursday, February 14, 2013

Day 243 - labs

The big news for today is that I got labs earlier this week and spoke with Dr. Hill about them. You may recall, I had labs in mid Jan and my platelets were like 30,000 too low. We repeated them a week later and they were like 15,000 too low. We gave it two weeks this time and they were  a little bit better, but *still* not normal. What is their deal? John's best theory is that I probably am fighting off some virus or the other and my marrow is just very sensitive to these things (remember last August? September? where one virus was enough to cause my counts to drop; we did a bone marrow; everything was fine) which is neither good nor bad, unless we are talking about my general stress level. I wish I was the one with the equanimous marrow, but I have bone marrow that pouts if someone in an SUV muscles ahead of it at the toll booth. Perhaps I can get my marrow to start meditating. Anyway, the plan is to recheck the labs again in two weeks.

I didn't really talk about it much here, but I had gotten myself sort of worked up about that set of labs. I'm not usually one to get too worried about things outside my control. Really. I don't see that as conflicting with being a catastrophizer. I don't worry about a lot of things, but when I worry, I do an excellent job of it. It is actually really easy to see right now while I am in the lull between getting worked up because I am about to have labs and getting worked up because I just had labs, that it was actually not all that useful to be so worked up. It felt so clear when I woke in the middle of the night after talking with John: just don't be so worked up; it's really not helpful; next time just remember how much energy and time you wasted thinking about it and how much more fun it would be to think about something else and then you should be able to stop being worried. When I woke the next morning, it didn't seem like such a foolproof plan: just don't do it. OK, then, Nancy Reagan.

In news of the day, I worked another grown up length day today and felt like I did a bunch of good stuff. I still see people every day who are excited to see me just because I'm alive. It's really a nice feeling. I wish I could bottle some of it to distribute back out to the world. I mean, really, every time we see anyone, we're glad they're still alive and didn't get hit by a bus on their way to see us, but I don't have that same feeling. What would it be like if every time I saw someone I thought about how glad I was that they were still alive? I wonder how long I could sustain that in a day before my attention wandered off?

For tomorrow, for myself, I will wish that I can remember how miraculous it is that we are all here all day. For you, I will wish you can feel how happy I am that you are here.

Wednesday, February 13, 2013

Day 242 - new world record

So, today I set my new world record for post leukemia work. I worked 7.5 hours in a row. I'm a little tired, OK? Not too far over the edge, but tired. My knees and hips even are tired and a subject and a verb that match seems like a bit of effort. I thinks I'll just relaxed them a little biddy bit. OK, maybe not.
Today was the kind of day at work that seems best described as wooly, as in: wild and wooly. Everything came out OK in the end and only involved two calls to the ED, one impromptu family meeting and a single call to the fire department to rescue a single small animal. OK, I'm joking about one of those three. Good luck figuring out which. Actually, you know how sometimes people surprise you by suddenly pulling out devotion or kindness or generosity you didn't know they possessed? It's especially nice when it's someone you thought had it in them, but who has acted for a long time like they didn't, then suddenly they do and you were right all along. It's also especially nice when it's someone you thought was just really not a nice person and wow! you were wrong and the world is a better place than you had thought. I had both experiences today so that made it a good day although it contributed to the wooliness by making me a little off balance a lot of the time. Happily off balance, but a little less sure that I understand how the world works.
I also got to spend some time today at CMC on E200 where I used to spend most of my time. It was just like old times and people are still coming up to me who haven't seen me since I've been back and saying how happy they are to see me. It's really such a nice feeling to have someone, often multiple someones, tell me how good I look and how much they missed me every day. I wouldn't recommend leukemia, but there are some nice things about it.
Now, I'm home, having fed myself, listened to Ellie sing every word of every math problem as well as about half the steps in every answer and will soon be rolling into bed happily.
For tomorrow, I am hoping for a cottony day instead of a wooly one for myself. I'm not sure what a cottony day might be like, but it sounds nice. For you, I hope you get the fabric of your choice, too.

Tuesday, February 12, 2013

Day 241 - teeth, review and yarn--real yarn

Today was a fun, varied sort of day. I started with a trip to the dentist (look, Ma, no cavities!) with a warning that one of my fillings is wearing out and will need replacing in the next year or so. Now that's something to look forward to!
My next activity was chart review at CMC with Sue. It was just like old times. It turns out I remembered most of what I used to do and there were just a few tricks that caught me by surprise. I had to pay the pathologists a visit to figure out how to answer one and that is always fun. I know so little about pathology that any time I even walk by the door to the department I learn something. Today's learning topic was prostate cancer. Sue told me that while I was gone, they had a problem getting the charts reviewed and really needed it done so after one of the cancer committees, they begged the docs to stay and each do one chart. It was probably a good learning experience for them as about a quarter (1 item in 4) of the quality assurance questions involve the clinical tumor staging form in one way or another and almost all of the docs on the cancer committee fill out lots of the staging forms. The exceptions are me and the oncologists as we do not do much surgery. It was nice to be in the med records department, chatting with Sue again. She has gotten a new vent since I was there last so it's even nicer.

Then home to Ellie and Maggie and my loom. I finished winding the warp and find that it is very nice looking. Tomorrow I hope to put it on the loom after a nice, boring day at work.
For me, I will hope for a day whose dullness is surpassed only by its beauty. For you, the same.

Monday, February 11, 2013

Day 240 - just the usual, ma'am

Today was a fairly normal day. The census in the Hospice House is down so I actually didn't work as long as I had planned today. I used the extra time to go to Planet Fitness and ride the elliptical. I am happy to report that I can now tolerate exercising to the official heart rate limit for my age. Remember how after I first got out I'd be only able to tolerate the 70 year olds' limit? Yeah, for the passage of time! I have been turning over in my head learning how to use the weight machines as I am still down in upper body strength for sure. I think my lower body might be back to normal.

I called my fellow AML patient in Lebanon today. He's doing well, about three weeks out, getting a little return of marrow activity. He said he was reading the Agnes Day piece when I called. The nurses put it on a bulletin board on the station which is awfully nice. He said he could really relate to the fevers and chills part, but it didn't feel right to ask him if he had been visited by any spirit animals.

Other excitement for today is I started my new warp. Weavers in general have to say to themselves a lot of things like "I need twelve which is really six" or "There are four which is sixteen" and double weave doubles the number of times one has to add in multiples of two or sometimes divide by two. I did the first three stripes of my new warp and realized that I made them twice as wide as I wanted. I will get the rest correct and when I put it on the loom, I'll just have to throw out half of the first three stripes. It is much better than having done it too narrow at which point, I'd have to unwarp and rewind all that yarn. And, don't forget, when you unwrap 600 inches of yarn, be careful how you wind it so it doesn't snarl!
This is the warp in question. The black, blue and black stripes closest to the bottom are the problem ones.

The rest of the warp colors are lined up and waiting patiently for their turns.

I was listening to a description of the new USPSTF preliminary recommendations about screening for intimate partner violence (the new name for "domestic violence"). It discussed the adults who they feel are at risk: women of childbearing age and the elderly. This means that the only age women are not felt to be at high risk is roughly fifty to seventy. I guess this is something else that (temporarily) gets better with the passage of time. What exactly does this say about our society that over half of the citizens are felt to be at high risk of violence for almost all of their life? I am not entirely sure, but I don't think it's a good thing.

I'm still reading "What have you lost?" One of the poems I read today is about domestic violence (parent/child; I'm pretty sure autobiographical). The poet says in her biography at the back, "Like everyone, she has lost many things, but believes there is one thing that can't be lost. The thing that makes us who we are. The one thing that is different for each of us." I was talking with one of the nurses today at the Hospice House about how the terrible experiences in our lives make us who we are as we learn from them (in her case, compassion). We were talking about how we wouldn't want to undo those experiences because they have made us who we are. It also makes me think of how very demented people sometimes go back to a prior traumatic experience and relive it over and over again. It would be a literal demonstration of not being able to lose the experience that makes them who they are.

Tomorrow, I am going to visit the dentist and then go to CMC and do some chart reviews for the cancer committee. Attending cancer committee was one of the last things I did before my diagnosis so I am expecting the experience to be a bit of a touchstone for me. I think the actual committee is later this week, but conflicts with IDG at the Hospice House so I will wait another couple of months for that touchstone.

For me, for tomorrow, I will hope for  happy touchstones and no cavities. For you, I'll hope for good dental hygiene but perhaps also a reminder of how far you've come.

Sunday, February 10, 2013

Day 238 and 239 -

The snowy weekend! I managed to get out with both of my little girls at least once. Maggie, Ellie and I went out during the storm and walked around. Ellie is light enough for her boot size that she stayed on top of the snow mostly. Me and Maggie sunk in. Deeply. We didn't last too long. On Sunday, however, the weather was gorgeous so Maggie and I went out for our usual three miles. I, on skis; she, on paw. I had never noticed before, but when she walks in deep snow, she separates her toes almost like she's trying to spread that lab toe webbing out to keep her on top of the snow. Lots of people had been out so she didn't break through too much and I on skis did not break through at all.

Here's a free piece of advice for all my readers: if you think your dog is mean and it doesn't come when called, don't let it off leash in public. We saw these people who were frantically calling their dog who was running towards us. They said, "The dog is mean sometimes. Be careful." and the dog approached Maggie who hid behind me. Here I am on skis with a known mean dog in front and my dog behind me. I had visions of getting bit when the mean dog lunged for Maggie and not being able to get out of the way because of my skis. Fortunately, they showed up and pulled their dog away. I really wanted to ask them why they let a mean dog who doesn't come off leash in a public park, but I couldn't do it.

The other piece of excitement in our household (at least for me) is that I have learned how to oven roast root vegetables. There are about three million recipes on the internet. I liked Pioneer Woman's best (after reviewing all three million of them) and loved the results. I really like grilling summer vegetables so I thought I'd try grilling root vegetables next. We keep our grill going all winter long. The only down side to roasted root vegetables is that my hand is stained purple. I hope it comes off by the time I start seeing patients tomorrow.

See? Our grill is totally at the ready. Taken during the storm--the view out our front door.

My little car with a snowblown lane next to it.

Tomorrow should be just a regular hospice house day and this whole week should be pretty normal at work which is good because it's the week of Ellie's play performances so we're going to be a busy family.

For myself, I will wish for more normalcy and for you, the level of abnormalcy you are happiest with.

Saturday, February 9, 2013

re: Symptoms Yams and toes

My friend TimL_SF commented on my last but one blog post and when I answered it, I realized that I wanted to be sure everyone could read it so I elevated the comments to a whole post and here they are:

From TimL_SF:

Hi Mary,

good post! Lots that I can relate to on the patient side here.

"they get a few days where they intermittently have the sensation of a piece of yarn wrapped around their big toe".

is this a humorous hyperbolic example or a real thing? Inquiring minds want to know, particularly since I first read it as "piece of yam". These old eyes ain't what they used to be. ;^)


  1. Thanks.
    This is actually a real thing that has happened to me. Initially I thought it was probably MS (because that is about the least likely and most catastrophic thing it could be and that is where I always go), but when nothing else consistent with MS developed, I figured it was probably something else. Eventually I decided it was probably a B12 deficiency symptom and then when I got my first set of labs in March, they were consistent with B12 deficiency, too, so I worried less about them than I would have if I hadn't had intermittent neuropathies over the years.
    A really interesting thing is that I know my doctors would be at least a little interested in neuropathy (it is also on the list of side effects from the chemo I got) and it just never seemed appropriate to mention it. No one asked me specifically about it and even though lots of residents and attendings spent lots of time with me, it just never seemed like something to mention.
    It feels stupid to mention it apropos nothing and the conversation never got around to someplace where I felt it would make sense to mention it. I know it's not an important thing--it's mild; it's intermittent--so I haven't felt any imperative to mention it. 
    It's really an interesting thing. People will get all kinds of variations on symptoms and specifically deny the official symptom, but agree to some unusual symptom that might be a cousin of the symptom you are looking for. I've made a bunch of diagnoses at various points in patients because I was willing to think "outside the box" when they said they had symptom X, could it really be part of Q or Q filtered through their particular nervous system/cognitive processing of the raw sensation.
    It would be fun to have a list of all the varieties of things that people endorse instead of what we doctors think of as a standard symptom. Hmm. This is the sort of thing that the internet was made for, isn't it? I know that I am a member of a perfect discussion group for this kind of thing, but I can't figure out if it was on google+ or linkedin or somewhere else. It's a good thing we have computers to make our lives easier, isn't it?

Friday, February 8, 2013

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 237 - symptoms

"You've been waking with nightmares for months? Why didn't you tell me?" I bet almost every clinician has had the experience of asking a patient about a key symptom that they endorse as having been present for months. It can be so frustrating because if you had known they'd had neuropathy or hiccups or whatever, you would have been able to identify their problem sooner. It's really hard not to say "Why didn't you tell me sooner?"
The thing is, however, all of us have a whole list of odd symptoms that are happening at any one period in our lives and if we mentioned all of them, even to a sympathetic and interested doctor that you know will not look bored, you will feel like a hypochondriac. It can be hard to separate the important stuff from the not important stuff if you are not a doctor. And, if you are a doctor, imagine trying to construct a question that will get the patient to tell you that for the past eight or ten years, every few months, they get a few days where they intermittently have the sensation of a piece of yarn wrapped around their big toe and the rest of the time, their feet feel normal that will not also yield half an hour's worth of information you are not interested in.
Alternatively, it can be hard even if you know that your doctor would be interested in some symptom, if they don't ask about it, to offer it. No, I don't have diarrhea, coughing, shortness of breath, fatigue or weight loss, but I do have this weird feeling...
It's not clear to me what, if anything, one could do about this situation. Clearly, you can't ask questions about every potential variety of sensations that a patient might interpret the symptom of interest as. A doctor calls it shortness of breath; the patient feels it as "there is something lacking from my breath, but only when I take a deep breath" and will deny shortness of breath (true story). You can not ask every patient whom you want to know if they have shortness of breath, "do you feel something lacking in your breath?" and then you would also have to ask them "do you sometimes feel some pain above your collarbones?" (additional true story) because you never know how a particular symptom will manifest with a particular patient and you would have to ask them a nearly infinite set of questions on just that one symptom, then move on to orthopnea. I think the best you can do is to make it as comfortable as possible for them to bring you whatever they feel they can and to sort through it as best you can. It's those open ended questions again.
That's what I've been thinking about on this snowy day. That and "Sleepwalk with Me" which was pretty funny.
For me, for tomorrow, I will hope for a pleasant, inside storm day and safe travels for myself and also for you.

Thursday, February 7, 2013

Day 236 - everything you wanted to know about warm blankets

I realized this afternoon when I stepped out of the shower and grabbed my hot from the dryer towel that I have not yet written on the vital subject of warm blankets. It turns out that chemo, losing weight, anemia and infections are all things that make people feel cold. I almost always felt chilled even before I got leukemia so you can imagine how I felt during the worst of the treatment. Anyone reading this who lived through last summer in New England will for sure remember how it as a summer with a long stretch of over 100 degree days. During all of those days, Dr. Hill felt it was best for me to stay inside for infectious reasons so I did not partake. There was a night when the air conditioning broke and honestly, it was a little muggy, but I don't recall minding it.
At any rate, there were plenty of times when I was really cold and people would bring me a warm blanket. The first rule of warm blankets is do not ever decline if one is offered to you. They're so nice, you want one even if you think you don't. There was more than once that I would say "no thanks" and then get to thinking about how nice it would be and end up pressing my button to get someone to bring me one.
The second thing to know about warm blankets is how to maximize their potentials, i.e., how to distribute the blankets. We'll go back a step and I will mention that if you are going to spend any time in the hospital, bring a blanket from home. Hospital blankets are heavy and not warm. Also, they slip off the bed easily and get tangled up in most unattractive and revealing ways. They're best used to augment the real blankets. My sister in law bought me a down comforter style blanket that I took every second admission and a friend made me a fabulous quilt that I took on the other admissions. Some admissions I took both. When someone brings you a warm blanket, you want to move quickly because it won't be warm long. Push or pull your top blankets down by your feet and get the warm blanket spread out as close to your body as possible (I used a single sheet between me and the blanket.) Then speedily pull the real blankets up to trap the warmth in. A lot of nurses would hem and haw after they put the warm blanket on about which of the remaining blankets they would pull up and keep and which they would remove from the room. If you do not put more blankets over the warm blanket quickly, you will not have a warm blanket anymore. If you are strong enough, figure it out ahead of time and shove the rejected blankets to the side or throw them on a chair before they even unfold the warm blanket.
This would be a good time to mention that I also recommend bringing your own pillow. I had my pillow in a home pillow case with the hospital case over it because at times there was a lot of sweating too. Then you could switch it out easily, but always have a pillow case if it slipped out of the hospital one.
As long as we are on bed tips in the hospital, the hospital mattresses are covered in plastic so they are really not that comfy even after there are sheets on them. What the LNAs did for me was to put a bathblanket (a lighter blanket with a tighter weave than the usual blankets) over the mattress and under the bottom sheet. This was enough to insulate me from feeling like I was lying on a plastic sheet.
Here is a funny thing about sleeping in the hospital for me (trigger warning for discussion of mortality). For the first few weeks I was in the hospital, I could not bear to have my bed lie flat because it made me think of how during a code, they sometimes tip the head of your bed lower to help get blood to your brain. It scared me. (end trigger warning)
For me, for tomorrow, I will wish for courage to face what I need to. For all of us, I will wish for safe travels.

Wednesday, February 6, 2013

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.

Tuesday, February 5, 2013

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.

Monday, February 4, 2013

Day 233 - a pun a day keeps everyone away

Today at the hospital I ran into a couple of people who knew I'd been sick but didn't know with what. I had been as clear as I could be that it was OK to tell people what was going on, but not everyone got the message or maybe the folks I ran into were trying to be discrete. It's funny to think about what if I had cared very much that no one know my diagnosis. It is hard to think of seeing people and having them say "I noticed you were gone; you look so much healthier; thank God you're OK" and just saying "thanks." It seems a real part of the illness is the being re-integrated at the end part. It seems when people express an honest pleasure in one's being alive and healthy that it is a little cold to not give them a sketch of what happened. On the other hand, I remember how it did get tiresome to say the whole "I have leukemia. Chemo. Three more cycles." etc. routine. This feels very different. Perhaps my tolerance is higher because it's good news and it's kind of fun to say "I'm in remission and am expected to stay there" compared to the other business. Anyway, it's nice to see people and one day, everyone who knew me before I got sick is going to have greeted me and welcomed me back and then there will be a day after that (and another and another) when no one gives me a special "I'm so glad to see you!" I wonder what that day will be like.

Otherwise, today was spent working at the house, the hospital and then I went home and ran errands. Some college student is going to get a package soon and that same college student has a dog at her parent's house who has conjunctivitis. Also, we needed apples. I really like apples and Anica who is doing an integrative medicine fellowship tells me they are supposed to be good for people with leukemia. I am worried, however because if an apple a day keeps the doctor away, will I develop a split personality in an attempt to get away from myself?

This whole week, I have very little that is out of the ordinary on tap. However, there is always something popping up. The novelty of no novelty is something in itself.

For me for tomorrow, I will wish for the wisdom to enjoy plain, normalness. For you, I will wish the same.

Sunday, February 3, 2013

Day 232 - ducks are funny. Ducks and snow are even funnier.

A couple of fun intellectual thing are happening in my life. I recently got to review an Article for Annals and that was fun. I'd never done a review before so I really had no idea of what I was doing. Obviously, I know how to read journal articles and how to evaluate them and to decide if the info in them should change practice or not, but it's very different to think about it for oneself and even to write about it in an informal venue like this compared to writing semi-formally about it for an editor, to try to convince them an article is worth printing or deserves an editorial or not, as the case may be. You also write a summary that goes directly to the authors of the article. That was actually the very hardest part for me to try to figure out what to say that would be constructive, not nit-picky and hardest to imagine--useful. These are people who are so together they can produce a nice little clinical trial, run it for a couple of years, analyze the results and then write them up. I come up with ideas for little research projects all the time and then when I imagine trying to do them, forgedaboudit! it's way too much work! Also, the authors are from a country where I don't know many people from and I have a hard time imagining to whom I might be writing. Anyway, that was my big intellectual activity for the weekend and I really enjoyed it.

My other non-work interesting thing that I am thinking about is PCORI (patient centered outcomes research institute). The idea of patient centered outcomes research is that a lot of research is focused on topics that are of importance to doctors and health care administrators, not to patients. For example, the diligent blog reader will recall that Marian asked what I knew about probiotics in neutropenic patients and I told her that there was zero research on it and that some neutropenic diets even disallowed yogurt so by extension, probiotics would probably also be on the no-list. Some neutropenic diets, however, allow yogurt with active cultures. There is very little actual research on neutropenic diets and you better believe that what you can and cannot eat when you are feeling crappy to begin with is a huge issue for patients. Anyway, the Institute tasked by congress for studying this sort of stuff is looking for people to sit on panels to help them define their priorities. That seems like fun so I'm going to write a 500 word blurb about why they should choose *me* and have been thinking about that, brushing up my CV, etc. So, that kind of sounds interesting, huh?

In the family realm, no real news. Ellie's hair is still red. Emily is still happy at U Mass. Maggie and I went for a three mile walk in PEA where it seemed 2 of every 3 dogs was a big black dog. She still is totally entranced when you wave a tennis ball in front of her. You know one thing that is funny about small towns is that even when you are in the woods with your dog, you run into people you know! For dinner tonight, our friends Rob and Louise invited Terry and I over for home cooked Ethiopian food. Wow! Delicious! Actually, the invitation included Ellie, but she rarely budges out of the house on weekends and especially not for adults she has not met.

These are duck footprints in the snow on the frozen river. The skids are where the ducks landed!

The little teeny black dots in the distance on the river is a flock of ducks waddling along, clearly with a mission in their collective mind.
I think these photos are funny.

For tomorrow, I will hope for all of us to see something that delights us.

Saturday, February 2, 2013

Day 230 and 231 - kid's stuff

Guess who went to the beach today?

I haven't been getting enough exercise lately because I've had so many little extra things going on: palliative care dinner, Ellie's school, Ellie's field trip, Ellie's hair shop appointments, my haircut etc. Wait, Ellie's hair shop appointments? Yes, Ellie now is a redhead:
First she got a bright pink streak in the underside which she enjoyed, but it was too subtle so she went back a week later and now no one can accuse her of being subtle. She normally wears it off her face and looks very pretty. She had it done Thursday after school so yesterday was the first day her pals saw it. The reviews were positive from her peers too.

I went in Friday morning to help teach "literary circles" to Ellie's class. The kids are divided up into groups of six and had read about a third of a pre-determined book. Everyone has a job: newspaper reporter, artists eye, interviewer, etc. and they presented to me and each other. My job was to keep the conversation on track and to let them know if things weren't making sense to me. The newspaper reporter went first and gave an account of the plot as though it was a newspaper article. The interviewer went next and asked everyone questions like "On page 94, some one is sent to the principal's office for calling the math teacher a weirdo. What do you think would happen if you called Mrs. Loh a weirdo?" or "What would you have done in Harris' situation on page 104?" The kids had lots of interesting things to say. One group read a book that was about a city person going to live on a farm for the summer. As we discussed the book, it became clear that we had a child who lived on a farm and the rest of the group lived in town. The kid from the farming family had different ideas than the rest of us about some of the stuff in the book. We all thought the part where he made a diorama and dressed the figurines in mouse pelts was disgusting, but the girl whose family had a farm didn't really think it was. I tried to relate the themes in the book to how the real life situation of us in this group right now, but it didn't fly. The good news is that Ellie tells me her friends who had me thought that I was "nice" and did a good job. Phew! I'm glad to hear I didn't embarrass her.

Then I went home and napped to prepare for the evening. At 4:15, Ellie and I and 98 or so other people climbed on a bus and went to Boston to see "Sister Act" and have dinner at the Hard Rock Cafe. There were about 70 kids and about 30 adults in two buses. The ride was unbelievably loud and from time to time, the kids would break out into song. It turns out that Hard Rock Cafe is also unbelievably loud and from time to time, the kids would break out into song, but not as much. I was surprised that when Justin Beiber (who is reviled in my family) came on, a lot of kids sang along--maybe half boys. Hunh. They had a very limited menu that we could choose from (it was a whole packaged field trip deal), but perfectly adequate for a field trip meal and they served us so fast, it was amazing. We were out in time, back on the buses and driving through congested theater district Boston. I felt badly for the cars around us because when the light changed, for the whole cycle all that happened was that our bus and the other bus went through. Block after block. Then we got there, went in, got into seats which were in the second balcony and waited for the show. I had gotten separated from Ellie and her pals so ended up sitting isolated with some people I didn't know at all. There was a lot of complaining from people who felt like they were going to pitch forward and fall all the way down, but of course, nothing like was going to happen. The show was OK. There seems to be a fashion now in singing to hold long notes out just a speck flat and then slide into the actual pitch right at the end of the five seconds you are holding it out. The female and male leads as well as the "bad guy" all did this and it got tiresome. The kids liked it although none of them really seemed to love it which surprised me. None of the songs were reconstructed in the bus on the way home either.

I don't know where our buses parked during the show, but it must have been very far away because the theater closed and the literally had us leave. There we were, all 100 of us waiting on the sidewalk for the buses, some of the kids without coats because when you are 13 or 14, if you don't want to wear a coat, you don't even if it is 25 degrees out. After we'd been standing around for about twenty minutes, a homeless man came up and told us he had just been diagnosed with HIV and had a bed at a drug rehab in Springfield, but didn't have bus money to get there. Could we give him money for the bus? It felt horrible because by ignoring him, one is not teaching the kids anything about compassion or generosity, but by engaging him, one is not teaching the kids anything about keeping oneself safe. On the other hand, just giving him money is not a good solution either especially if you imagine having provided him with the twenty bucks that he bought his fatal dose of heroin with. So, the whole problem of homelessness writ small and bitesized for us relatively rich and sheltered suburban folks and my response was found wanting, as was all of ours.

Eventually the buses came and I was so tired I fell asleep on the way home even though they were unbelievably loud and the kids would break into song from time to time.

Today except for the beach was beautifully dull. For tomorrow, I will hope for myself similar beautiful dullness. For you, I will hope for the level of interest you would like.