Sunday, March 31, 2013

Day 288 - run, view art and identify your infection

I checked at about 1:30 and happiness! my culture was back--sensitive to methicillin, but not to other pcn's and sensitive to every other antibiotic. The small print at the bottom said it should be sensitive to pcn+beta lactamases (i.e., the augmentin I got earlier this month), but perhaps not and perhaps that is why it didn't vanish with the disgusting sputum I was coughing up when I took the augmentin. I suspect it is time for another round of antibiotics, but fortunately since there are so many other alternatives, not vanco. You may recall that vancomycin seemed to cause fevers before. It was never 100% clear that it was the vanco (although the 1West nurses and I were completely convinced) and it is not 100% clear that my immune system now that it is not leukemia/neutropenia disregulated would respond in the same way, but if it's all the same to everyone, I'd like to hold off on finding out.

Here are the last of my New Orleans pictures. The New Orleans Museum of Art is really a fabulous museum. They're open late on Friday night, had a pianist and a singer, sold drinks in the lobby and had a fair number of people there. You can get right up close to the works, there were no crowds by the art (there were by the piano) and they had a lot of really great stuff including this Modigliano that I took for Terry who really likes him and the de Largilliere below that I just loved. I had never heard of him before, but something about the self-portrait really speaks to me.
I didn't see a security guard in the museum the whole time we were there.

I love how informal this guy looks and feel like he is about to start saying something to me about the canvas behind him that he is gesturing to.
Watch this space for upcoming shocking pictures of the flowers that are starting to grow in my front yard!
My other happiness for today is that I managed to get myself out on the shoulder of the road for 5K today. My speed is about the same as pre-leukemia even though I had to walk a couple times because I got tuckered out. I think this means that overall I might have somehow sped up! Perhaps those blasts were weighing me down.
I am so thankful that I can run. I am hopeful for more running soon. I am hopeful for you to be able to engage in your favorite outdoor activities too.

Saturday, March 30, 2013

News unrelated to Agnes

Three times since New Year's I have gotten mild cellulitis of the nasal tip, just to the left of the tip of my right nostril. Not a huge patch, but it doesn't take a very large patch of bright red or even pink in that location before one feels quite noticeable. It goes away with some combination of neosporin and on its own. It recurs each time I get a runny nose, most recently this week. Three's the charm so I called my doctor's office to ask what they thought I should do. (Look how good I'm being! I *called*; I *asked*; I didn't just do what I thought I should.) They agreed with what I thought and asked me to stop by and swab my nose. This morning, it was growing staph aureus, sensitivities pending. Drat. Hoping for M*S*SA. I'll let you know.

I am thankful that I have not had any worse problems with resistant organisms. Given that my ANC was 200 when I was diagnosed and I was hanging around in a hospital, that is a huge piece of good fortune. I am hopeful for antibiotic sensitivity and that my port wound continues to heal nicely. I hope for you that you can avoid resistant organisms effectively.

Day 287 - return of the basset

I think I might be getting old because I am having a harder time sleeping in even when I am tired. I just automatically wake at 0600 or so without an alarm and can't seem to get back to sleep. I have heard this complaint from many an elderly woman. I don't mind because one of my favorite things to do is lie in bed and stretch a bit then roll from left to right to left and think about stuff and yawn and I could do that easily for a couple of hours if the house is quiet. I think I may really have fallen asleep, but who knows? I didn't feel asleep.
I was halfway up a narrow steep flight of stairs. They were dusty and at the top was a little landing where the stairs turned around and a huge round window with sun pouring through. I don't know why, but I was really afraid to go up the stairs. I could hear the sound of a dog's nails scrabbling around on the floor above me.
"Agnes? Is that you?"
No answer.
I lifted one foot to the next riser and shifted my weight up. Other foot. I felt each step in exquisite detail, the way my shoe felt when it hit the stair, my thigh muscles contracting to lift up my weight. Even though I thought Agnes was up there, I was terrified. I don't know why. I could feel my heart pounding in my chest and my neck. When I got to the top, it wasn't a landing but steps that curved around and the ceiling was really low and I had to lean way over. There was a very dusty, dark room at the top and Agnes was there!
"Agnes, I'm so happy to see you! Why didn't you say you were here?"
"That wouldn't have been honoring your fear."
At the time she said it, I knew just what she meant. Now, I have no idea.
I sat on the floor and scratched behind her ear; it was so incredibly soft and then I pulled her into my lap. She scrambled out and sat facing me. I couldn't figure out why she did that.
"Agnes, tell me what's going on!"
"I'm a dog," she said, "I can't talk."

So, what, I wonder, exactly am I supposed to make of this? I am doing some new (and, yes, kind of scary) stuff in a couple domains in my life that I don't really want to talk more about. I'm sure that brought her out. Was I supposed to find her visit encouraging? I wish I understood more what "honoring your fear" might mean.  I found it more helpful when Agnes provided me with more direct advice, but it was nice to see her. I had wondered a little bit if she would make a repeat visit and certainly when.
And, really, isn't that maddening? "I can't talk." Yeah, and I can't type. Geez.

Friday, March 29, 2013

Day 286 - being cross about the health insurance blues

You may recall my (tiny) insurance troubles. The first was that when I took an ambulance trip, the insurance company sent a check to me for half of the fee and I sent the check on to the ambulance company, then the insurance company paid the other half of the fee. The ambulance company was happy and said they had been paid, but the insurance company said that I needed to pay them back half of the fee. It turned out when I called them that the rep said that they might need me to send them a check for that amount because they had made an accounting error and put the amount in the wrong column and she wasn't sure if they could correct their error. I asked her to work on figuring out how to do fix it. A couple weeks later we got a letter telling us that we did not owe them any more money.

As for the more important one, my disability, no progress. I sent an email to the person who has been helping me with disability stuff and she sent me an email saying that she had sent it on to the new case manager and I'd hear in 3-5 days. Eight days later, I sent another email asking what the status was and she said I'd hear soon. Monday I will ask for the case manager's phone number. I really only care about it in the case that if I relapse I don't want to be denied disability because Dartmouth goofed up this episode. If some one could assure me that if I need to go out again, there won't be any problems, I'd pack up my issues and stop darkening everyone's inbox.

I recognize that my insurance troubles are so simple and miniature compared to most people with serious illnesses and that I have enough energy to deal with them and am not barfing or in pain and yet still they're a nuisance to deal with. I am in awe of people who have to deal with actually being disabled *and* insurance screwups *and* whose insurance is more complicated than mine so things go wrong constantly. (Mine has been pretty simple. Work for DHC, get almost all my treatment through DHC. Insurance is through DHC. Everything I need is in network and I do not need to cough up any money besides my copays and deductables.)

I am thankful that I have good medical insurance and hope my family and I always do. I wish that for you, too.

Thursday, March 28, 2013

Day 285 - the leukemic and not clearly thinking

I've had some really nice patient interactions recently. I've seen a patient so delirious he was requiring a person to sit with him all the time clear up enough to tell me he really didn't like Barack, but "he's the president so there's no use complaining about it." I had an actively dying woman squeeze my hand on request after her family had given up hope of being able to hear anything else from her. I really like my job and the things I get to participate in every day. I am tremendously lucky.

I saw another delirious patient today (that is evidently my theme for the week). She was much less delirious and could have a conversation and in fact doubted that she was confused at all even though people seemed to be thinking she was. I don't usually talk about myself with patients, but I told her that I had had cancer and that when I was getting chemo and my husband told me I was not thinking well enough to drive that that was really the worst thing for me. The more I tried to prove to him that I was thinking well, the more I sounded like a person who was not thinking well. She agreed with me and I felt her soften a bit and felt like she was willing to listen to me where she had not been so much before. I told this story to her nurse whose response was "Even you with all you know had a hard time with that?" There are some things that education and knowledge do not protect us from. I think for me the fact that so much that is important to me in my life happens in my head made the whole experience of not thinking well even worse. Evidently some famous person has talked about "a million dollar experience I wouldn't pay two cents for" and that is such a good description of the leukemia. I never understood how horrible not thinking well would be and I was just subtly impaired. I cannot imagine how scary the world must be when everyone around you seems puzzled that you are talking about the basement of a concrete slab building.
This is a street in the French Quarter and don't you tell me otherwise.

Those powdered sugar deep fried beauties there are called beignet (said bin YAYs) and they are about as delicious as they look.

I loved the trees framing the old brick building and the new building under construction. Sometime I will learn to crop photos and then they'll be nicer. This was taken through a bus window in motion.
I am thankful for the beauty and interest I feel in the world. Those are qualities I have not always found in the world and I am much happier when I can see them. I am hopeful to always have that gift. For you, too.

Wednesday, March 27, 2013

Day 284 - more conference summary

The window is actually a whole story high and inside is a room sized sculpture that you can climb inside of and climb into the second story of it. It's made out of scrap metal and old car parts and wood. Some parts move and you can clank them into each other for gong kind of effects.
The Mississippi River in the other direction and some bridge or other.

I enlarged this so you could see the float driving down the street. We saw lots of parade like things while we were in New Orleans. The locals did not bat an eye at multi-colored things driving down the street while we were all agape, "Is there a parade?" Things like that just don't drive around Manchester.
Now that you're in the mood for more New Orleans, I'll finish the survivorship lecture. He finished by talking about that curability of bad cancer has not changed; what has changed is that people are surviving longer. What is funny to me about that statement is the old saw that "life is a sexually transmitted disease which is universally fatal with no cure." I wish I had gotten more details on exactly what he was talking about because he gave survival times for advanced cancers: colon at 22 months, pancreas at 11.5, lung at 10. I wish I had the source and could find out more about those numbers.
I went to a case presentation of a patient with borderline personality disorder who was dying from her cancer in an inpatient hospice unit. They gave specific details of the behavior and the intervention, but the take home was that in their case it worked really well to have the behavior clearly identified (pick your battles), limit set in a way to make sure the patient didn't feel abandoned, have everyone respond exactly the same way (to the point of here are some specific words to use), to define consequences clearly to the patient. In the case they gave, the consequences were that the patient would be discharged from the hospice house and go back to the hospital. This particular patient was such a good staff splitter that they had to have the nurse that she had put in the "good nurse" column off from work while they implemented the behavior change plan. They talked about borderline personality disordered patients as having three states of feeling: held (the ideal state), threatened (where the undesirable behaviors come out to help the person feel they are getting back to held) and alone (where the person gets impulsive, dissociated and, at worst, paranoid). I think I can recognize BPD in patients, but had never been walked through here's what's going on or here's what to do about it. Interesting stuff.
Otherwise, today was spent about half and half in patient care and filling out the dreaded hospice certs and other forms. Not too bad.
I am thankful for Terry's new bike and the fact that it is warm enough he can ride it. I am hopeful for continued thaw and de-snowing of my neighborhood.

Tuesday, March 26, 2013

Day 283 - annoying and new

I have never been a headachey person. Until this month, I would say that I get one headache per year or so, but I have had a couple this week alone. I have taken my tylenol and am taking to my bed.

O, and PCORI turned me down which is OK because I am plenty busy, but still disappointing.

I'm thankful for all the years of no headaches and I'm hoping this one goes away soon. For you, I will hope for no headaches too.

The inside of the church in the previous post.

A partially constructed building. They should stop now, it looks so cool.

A tree on St Charles St in New Orleans. I enlarged it (because I just figured out how) so you could see the stuff hanging from the tree. Those are Mardi Gras necklaces.

Monday, March 25, 2013

Day 282 - we read books

When Emily was in town, we went to Water Street books because like any comp lit major who is thinking about library school, she loves her some books. I bought Emily a novel she had been longing for and had it wrapped for a present. Then I saw a book titled "Until I Say Good-Bye: my year of living with joy" which like any hospice and palliative care doc worth her salt, I was compelled to pick up. It is about a year in the life of a woman with ALS. It is not an uncommon doctor sentiment that ALS is the worst disease in existence and Susan Spencer-Wendel writes about facing the disease, deciding she is going to enjoy the time she has left and concentrate on helping her kids build good memories. What a fabulous book. I am happy to loan it out when I am done and highly recommend it for everyone, medical or not, hospice or not. Here is a tiny bit: "When I think of which role is worse--to be the spouse dying or the spouse surviving--I think it's the latter. The survivor will experience the same grief, will live the grief of the children, then must assume the responsibilities and slog on." Let me know when you want your turn with the book.
In other excitement, now that I am cooking something most weekends and freezing half of it for lunch, it's kind of exciting to take something out of the fridge and find out five hours later what's for lunch.
Here are some photos to get you in the mood for the next topic.
The Mississippi River is wide here. The train whistles were blowing in the background, there was a gentle wind. It was 50 degrees.

The church is the big cathedral in the French Quarter. In front of it is the famous park in the French Quarter and the clouds are lined up perfectly to draw your eye upward. There was music coming from a little brass band in front of the church and also from a guitar player a block away and to the right. It was very comfortable there.

I am working on an email to send out at work about the Home Health and Hospice Care-relevent portions of the AAHPM convention which I will probably post here at some point in the future.
For now, I'll tell you about the Cancer Survivorship lecture I went to. There were a whole bunch of speakers which is always a good plan to keep people awake especially if you have a lot of information to get across.
There are 13.7 million cancer survivors in the U.S. with 64% diagnosed five years or more ago. (The current definition of survivor is anyone with the diagnosis, as soon as they are diagnosed.) They talked about the nuts and bolts of what does a palliative care consultation for a cancer survivor look like, what kinds of symptoms get managed in a survivorship clinic, what is a survivorship plan. The most interesting thing they talked about were the psychological issues: in the personal domain (the "new normal," body image, sexual health, fertility, coping strategies and the implications of having lost one's safety net), in the interpersonal (caregiver distress, changes in roles, support networks and intimacy), psychosocially (loss/anxiety over future accomplishments that are lost, fear of recurrence and death) and in the socioeconomic realm (bills, insurance issues).
A surgeon got up at the end and talked about how she was creating survivors and how these stage 2 colon cancer patients usually did not even need to see an oncologist; they had their surgery and they were done. I feel, after the intensity of the treatment, somewhat out flapping in the breeze alone myself at this point, and I cannot imagine what it must be like to be in the position of one of those patients. After your surgery and your post-op care, you're done. You've had this huge diagnosis dropped on you and you get almost no support from the medical system for it. I mean, you're likely cured and you're grateful and all that, but it's still a huge diagnosis to get. I see a little bit why survivorship clinics could be tremendously useful to people.
I am grateful to have a job that is so endlessly fascinating. I hope to practice with skill and more each day. I hope you are intrigued by whatever you have to spend the majority of your hours doing, too.

Sunday, March 24, 2013

Day 281 - imPORTant details

Well, the days go quickly so I find myself saying things like "It's nine o'clock; I better do the NYT crossword and then go to bed" and the weeks go even faster so a whole week goes by without even a 'how do you do?' from me to the blogosphere.

Since the last time I've posted, I have been to the New Orleans conference, learned a lot, come home, spent a week with Emily including a happy birthday, sent her back to school, got my port out and worked for a week.

I think I'll post another day about the conference and all the cool stuff I learned. I'll mention that Emily turned 22 this week and that we had such a nice visit with her. We went out to dinner several times and made mac 'n' cheese and went out for coffee and tried to buy a scarf. Ultimately, she decided the scarf she really wanted was one a former patient made me after my diagnosis. My former patient heard from Ellie's friend's mom about my story and said, "Hey! Is her name Mary?" and made me a beautiful shawl which works nicely as a scarf too and which I will now pass on to Emily. Kind of nice, huh? Other activities with Emily involved chocolate, bookstores and coffee as would be expected.

After the jump, I'll post a couple of pictures and some text about my port. When I had it out, I asked my surgeon if I could have the port to keep. He turned to his nurse and said, "Do we have a policy about that? No one has ever asked before." If you have wondered what the port looks like without all that skin and SQ fat over it, now's your chance to find out. It's not too gross, but there is a small amount of what used to be part of me stuck to it.

Wednesday, March 13, 2013

Day 270 - AAHPM in New Orleans

Today I went to two classes, each four hours long: "Workplace conflict" and "Witnessing Suffering." Both were useful, fun, informative, etc.
The morning was "Workplace conflict" and the first incredibly useful thing I learned was that the scenario at work that I find the most difficult part of my job (it's a specific type of doctor to doctor interaction) was exactly what the other folks found toughest. It was funny because a lot of what we did was almost like a mutual support group for palliative care docs. These folks from all over the country had the same kinds of issues as me in little old New Hampshire. That was very comforting: a) it's not me personally b) it's the field in general. We did a role play and the feedback I got was that what I thought we were in conflict about was not the actual conflict. In fact, by the end, some one proposed as a rule of dealing with conflicts if you think you know what the conflict is about, you're wrong. I thought that was good. This happened over and over. As an example, in one scenario, we were being two doctors who felt the work was distributed unfairly between them. My doc's real concern was that she was working so hard she was burning out--would she be able to do this on a longer term, what would happen if she couldn't, was there another job she could do, etc. The other doc's real concern was that she was a bad mother because she had not planned ahead for her daughter's graduation. We were fighting about whether or not I could work an extra day the next week. A good lesson because I think it was actually extremely true to life, not necessarily the exact scenario because my group is very congenial about how we divide the work, but the idea that in conflict, you often don't get to the real issues, often don't even know what the real issues are.
The second workshop was on "Witnessing Suffering." The reason I signed up for it is that sometimes I feel like there is so much suffering all around me that it is all I can do to keep my head above water. And I want to do more than that; I want to help my patients with their suffering if I can. Sometimes the only help one can offer is to witness the suffering and if that is the case, I wanted to be doing it as effectively as possible and also to see if there were any self-care strategies that I could learn. One of the strategies (not explicitly stated, but very present in our discussion) was being gentle with oneself, celebrating the victories even if they are just partial and talking with one's team. Again, what a great team I have because we can and do discuss these things. He had us do this exercise where for 7 (!) minutes, we were supposed to notice everything red and write it down in a list. We could get up and walk around, but not talk with each other. Then at the end, the objects of interest were not the lists of red things, but what we had observed about ourselves during the act of observing red things. An interesting thing people talked about was discernment: was this red enough to be called red? how after you got all the things that were big and obvious, you started to look for little red things, etc. The idea was to see which of the observations were analogous to looking at and for suffering and which were not. We did a lot of story telling in pairs and kept switching partners. One of the women I talked with told me a story about a young woman with AML whose family she had prepared for the patient's death and then weeks after getting chemo, when it had been clear that it wasn't working because she was getting worse and worse, she suddenly went into remission. Well, I had been prepared to tell a completely different story than the one I did tell when it was my turn to tell a story about suffering.
I am going out to dinner tonight with some conference goers who I connected with on linked in so hopefully we will have a good time and I would like to tell you more about the conference, but must go put on respectable clothes (or the best imitation of that I can do).
Hey! Check this out! Terry was nominated for a favorite artist award on Seacoastonline. Here is where you can vote for him in the category of functional art.
I will wish for myself continued incredible learning and for you the same.

Monday, March 11, 2013

Day 268 the journey

I am writing somewhere between Orlando and New Orleans. At the last stop a bunch of adults wearing Mickey Mouse ears got on. There is a woman in the row ahead of me with a plastic Mickey Mouse hat with a wedding veil hanging from it. I wonder if they are getting back from their honeymoon. As you know I am going to New Orleans but most of the people on the plane are going to Houston. Do people from Houston go to disneyworld for their honeymoons? The plane is only about a third full which is much nicer than the flight to Orlando when not a single seat was open. I was not the only person coughing by a long margin too.
Other excitement for the trip is that I have completed all the journals I brought with me and moved on to my Christmas present from Emily "The Midwife" which she is correct I am really enjoying.

I was interested to learn that my port did not set off the scanner at the airport although I had to be scanned twice because I moved.
I am glad that I have travelled westward because I am quite tired and the idea of having to get up an hour early on Monday because of daylight savings and then to get up an hour earlier on Tuesday because I travelled eastward would be more than I could bear. The poor folks coming from California have a lousy transition to look forward to.
As for me I am looking forward to learning a lot (conflict resolution in the workplace and mindful listening are tomorrow's topics. For you, I hope for a lot of learning too.

Sunday, March 10, 2013

Days 266/7 - O! the normalcy

The big excitement of yesterday and today was a trip to the beach each day. The weather is starting to speak of spring and it's really nice to be out in it. There's no snow on the beach although there sure is in my back yard! The winter storms have caused the beach to revert to its naturally rocky state. All the sand has been blown up into the parking lots and a little bit is left at the water's edge. Most of the beach is rocky and covered with rivulets so you really splash along no matter how far you are from the water's edge. There were about eight corgis there and several lab kind of dogs, but Maggie only had eyes for her tennis ball.
The beach yesterday.

The beach today as Maggie brings back the tennis ball. I love the clouds reflected in the sand. It was bluer than that and not so dark. If only I knew how to use photoshop.

 After tomorrow, I will be leaving Terry and Ellie to their own devices for most of a week as I go to the national convention of the AAMPM (American Association of Hospice and Palliative Medicine) in New Orleans. Right now, I am mostly thinking about how much I will miss them, but I think (hope) I'll get more excited about the convention when I get there. I will be taking my ipad which I have used successfully before to post so hopefully it will all be seamless.
For me, for tomorrow, safe travels. For you, a good journey, too.

Saturday, March 9, 2013

Day 265 - late entry

I am having lots of insurance issues. It turns out my disability is somehow messed up retroactively to December when I went on long term disability and my health insurance thinks I owe them $1000. I'm not entirely sure, but I think they double paid the ambulance company and would like it to be my problem instead of theirs. Such troubles combined with working close to full time (I better get going now that my disability has been terminated!) and the late winter/dare-I-say-it?early spring cold make for a full day. So, not much to say about yesterday except I was happy to take to my bed at the end of it.
Because I've had this horrible cough, I thought it prudent to visit my doctor. I was a little embarrassed because one knows that antibiotics are overused and bronchitis is a major contributor to that problem. On the other hand, cough, cough, cough, tons of sputum, etc. She did a chest xray which was normal and a CBC which showed a normal--upper end of normal white count. That seems odd because usually viruses send my marrow to the fainting couch. Perhaps support for the something bacterial going on theory of this cough. At any rate, a different kind of patient experience for me; I didn't have to really worry about this one: either I needed an antibiotic or not, neither option was likely to be more than a tiny blip in my life path.
My day also included running into a higher than usual number of people who didn't know about the leukemia; they just figured we hadn't happened to intersect each other for eight months. It's weird to say casually, "O, I guess you haven't heard. I had leukemia this summer. I'm fine now; in remission and likely to stay there." The whole experience in one bite sized nugget. It makes me think of "The Hitchhiker's Guide to the Universe" how after the guy has had this huge experience on Earth, he changes his evaluation from "harmless" to "mostly harmless," as though the whole six volume adventure series can be summarized in one word, as though the whole chemo, hospital stays,  problems for my family, fever experience can be put into a sentence or two. Or really for that matter a hundred thousand words or two.
For myself for today I will wish for some nice family time. For you, I will wish for time with those you love.

Thursday, March 7, 2013

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.

Wednesday, March 6, 2013

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?

Tuesday, March 5, 2013

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.

Monday, March 4, 2013

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.

Sunday, March 3, 2013

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.

Saturday, March 2, 2013

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.

Friday, March 1, 2013

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.